Time for a Comeback!

I know it’s been a very long time between my posts. I can’t just write it off as a small thing, I’ve just needed some time to adjust to some new things and those have had some real impact on my life. I mean, I am OK, I’ve just been preoccupied is all. 

Over the past 3 months, I’ve been having my HbA1c monitored. This is a marker for diabetes. Diabetes is a major side effect from being on long term prednisolone, after 15 years I think it was inevitable. I wish it was simple and I could just stop taking prednisolone but my body no longer makes the cortisol hormone that we all naturally make what this means is that if I was to stop taking prednisolone, I would experience a life threatening Addisons crisis which would require urgent medical attention or I would die. 

I just wonder why it took so long for this to start happening or was it just going on for a while but no one really noticed. The thing is, when you’re already poorly and you feel unwell pretty much all the time, you stop noticing as much when something starts to happen. With my asthma, it’s like I’m aware of certain symptoms but I’ve become a little bit complacent about others as they’re always there, perhaps you could say that I’m just used to it.

So now body isn’t making its own insulin as well it used to and what it has made isn’t as effective anymore now either. Which means that my blood sugar is high and my body is not happy about it. I started noticing symptoms over the past few months. It started out as little things like weight loss, generally being tired all the time and spending more time in the “little girls room” after constantly wanting to drink. My potassium levels are suffering too so I’ve been having quite frequent spasms in my legs and a lot of twitching. 

Over all, my general health this year has been a challenge, and as usual, I’ve tried to face the challenges head on instead of running away. I have quickly adjusted to monitoring my carbs and take my insulin like a pro (although I learned that sometimes you’ll graze the capillaries and you will end up with a massive purple bruise), monitoring my blood sugars along with my peak flow. It’s just another piece of the puzzle that makes up me. 

How are my lungs? The simple answer is, grumpy. I think it’s more to do with the seasons changing than anything else. Or at least I’m hoping. I’ve had to remember that I’m not just managing one thing. There’s so much to keep an eye on now. Routine is especially important, especially meal times, and I have to keep to a strict regime of treatments that it becomes almost like a full time job. I’m not complaining though, the hours may be lousy but it’s not as bad as it could be! It’s all about finding perspective and understanding that yes, some days are just going to be better than others and accepting that it’s not something I’ve done wrong, it’s just what it is.

We have finally seen the oral surgeon, after nearly 2 years due to covid backlogs, and the good news is that he’ll do the two procedures I need done at the same time so I’ll finally be rid of that retained root and that bothersome wisdom tooth that have been causing problems for too long. When I asked whether the anaesthetic would be safe, he said the risks were low still and honestly the benefits outweigh them. Makes me wonder why the hernia surgeon was such an ass about it all, but all being well, I’ll ask to be referred to someone else. I’m not really nervous about having this surgery done, the root particularly has been bothersome as it’s been pushing near a nerve and causing infection after the extraction ended with the tooth breaking up and the nerve being impossible to remove in normal practice. I guess I’m looking forward to not having the thing there anymore and being able to move my face with no pain.

We’ve been working on getting rid of some bad habits. Getting out of the bedroom for a bit during the day, rather than living in one room all the time. We’ve been going out for walks a bit more recently too, well I’ve gone in my chair. It’s nice to have a little bit of time out of the house. Even if it’s only half an hour or so. I love autumn, especially in the wooded area near here, as the trees start to change colour. It reminds me of when I used to play in the woods as a kid, climbing trees or just looking for conkers and acorns or picking brambles off the bushes in my Nan’s back garden, much to the boy’s delight as they get some tasty treats too. 

Sonic is getting really big now and knows just how to manipulate everyone in to giving him food, he’s happy and inquisitive. Still screams at running taps or vacuum cleaners but otherwise he’s grown up so confident and playful. Percy has been settling into the idea of a forever home, instead of moving from place to place. It took some extra work to get him to trust us but he’s getting the hang of it now. The thing with a prey animal is find something they like and offer it to them so they learn that the hand reaching for them isn’t going to harm them. With all things, it’s a case of been patient and gentle with them, they’ll come to you sooner than you think, and there is nothing more rewarding than earning the trust of a small animal. I think that Percy may be up there with Kadaj as one of my success stories, another pig who had trust issues from the start. 

So yeah, that’s what I’ve been working with recently. I intend to blog more over the next few months as there’s so much I’m learning and trying right now and I want to keep going and pushing forward.

Til all are one.

Wendy xx

Art

​One of the best coping mechanisms I’ve ever discovered is art. It heals me in ways that are sometimes unexpected and yet always pleasant. It’s like when I draw, I leave the places and surroundings of life and I become immersed in this world where if I can imagine it, it can exist. Maybe it’s a form of escapism? Taking my mind from what can feel dark and gloomy and going to a place where full of colour. It’s amazing really.

I’ve loved drawing ever since I was a kid. Whether it was scribbling on scrap paper or just doodling in the margins of my school work (I had a full on ‘conversation’ through notes and doodles with a teacher in year 10/11 and it was so funny for both of us) or In a purposely brought notepad. It gave me a place where I could just -be- and decompress after a long morning or afternoon. Sometimes I would just sketch random thoughts or cartoons or other days I’d copy logos or reference from books. 

I left Weston Road in the last term of year 9, I was broken by that point and probably had some kind of PTSD from the whole thing. It wasn’t until my Mum saw my doodles and sketches, she knew I loved to draw and colour, that I realised that actually, I wasn’t bad at this. I took art as a GCSE and then at AS level, passing both as well, and the more I was doing, the better it made me feel. Since then, art has been such a big thing to me and it’s something that I find helps to calm the negative things and shows me something positive instead. 

Obviously writing helps a lot as well as I’m actually giving myself the one thing that during my childhood I never had as such, it gave me a voice and a positive outlet for those horrible thoughts and feelings that I’d been told to believe were my truth. It gave me purpose, beyond being someone to torment and make miserable and it gave me the courage to make the life I want rather than the life I was told I deserved. 

I want to spread the idea about the healing aspect of art, writing and music. Don’t keep it all bottled up, trust me it never ends well and I’ve got the scars to prove it, and just do what feels right to you. 

Remember, art heals.

Til all are One

Wendy xx

Mental Healing

​I’m back from a bit of a hiatus. It was a bit of a rough summer and I didn’t want to blog about everything as it was getting me down and that’s not what this is. It’s not a “Wendy moans about life” kind of page, more of the ways I’ve worked around the difficult paths and I hope it helps to inspire others. This summer, we lost Marik in May then about a month later we lost Yugi as well. Losing Yugi hit us both especially hard as we had had him for 7 years, he was an old boy but he was our little old man. We then we got new pigs, Sonic, a cheeky youngster (he’s 8 months now) and Percy who is closer to 18 months now. Both pigs are getting on well and are definitely warming up to us. 

Now, not something I enjoy speaking about. I spent a lot of time trying to pretend that I didn’t have mental health issues as a teenager but it’s like painting over a crack in the wall. It may look fine for a bit, heck it may even function as normal and not show anything for years until it’s past the point of no return and it becomes a hole or collapses completely. The thing with mental health is the stigma attached to it. That feeling that everyone is looking down on you because you’re struggling in the same environment they aren’t. Or you get people who take great pleasure in pointing out your flaws and constantly reminding you how that makes you less worthy. The amount of times where I’ve have to answer someone along the lines of “yeah, I’m aware of it, it bugs me, so stop reminding me,” it’s like they don’t realise that I do already see these things!

So what if I’m a bit OCD and wash my hands whenever possible or I have my rituals and things I have to do before taking on the world. I’m socially awkward and often find it hard to relate to others but that’s what happens with people who have Asperger’s like me. Bipolar? Yeah that can suck when you get caught in a rapid cycle. Imagine one moment you feel like you could take over the whole world with a pair of underpants on a stick then the next, you feel like everything’s just piled up on your head and you can’t even think about anything. 

I started this blog so that I’d have a safe space to talk openly and honestly about things, after a very difficult time where I had attempted a few times to do something awful because I was so depressed and just couldn’t see my life getting past this. I’ve never held it back from people that I’ve got a number of mental health issues and that over the years, some have ebbed and seemed to get easier to cope with as my environment changed but others have been more troubling. Having psychotherapy at the end of last year was pretty intensive but it helped me find some kind of understanding and balance to stop those feelings from overwhelming me. It also helped that I learned better coping mechanisms other than what I was using, mainly self harm, or had used in the past. I used to look at my scars and think that I was weak for doing them where actually I was just desperate to release that scared or sad little girl inside of me. 

It’s interesting that so many of us forget that under all our adult façade, there is still a little child in there. That little child needs just as much as the outer adult. It’s OK to do something that helps your inner child, even if it’s just something small like having a moment with a much adored soft toy or watching/listening to something you liked back then. My secret is that sometimes I watch some of the old programmes from when I was small (Trap Door, Thomas (the original model series) or old cartoons), enjoying the familiar sounds and that feeling of safety they gave. 

It’s OK to want that.

It’s not harming anyone else.

I guess that’s all for now.

Til all are one.

Wendy xx

May

​May is a month that I’m facing with both gratitude but also sadness. It’s Nan’s birthday this month. I miss her. The way she smiled and chuckled at us and how she could make everything feel better. I miss her scent and reassuring touch. She was an amazing woman who had an infinite capacity for love and her family was her biggest joy. These last few years have been so difficult because of the Covid-19 situation and sometimes I felt like it was never going to end. I still feel that way. I’m still scared that someone else could get taken away. I’m scared of getting it myself because I don’t know how or if I could survive it. Losing one grandparent was tough, but to lose both of my grandmothers within the space of 10 months was the worst. 

The gratitude I feel for May comes from the fact that I am still here after many years of health problems and uncertainty. 8 years ago, I was started on oxygen and it was such a change. I never realised how poorly I was beforehand. I was just making do with what I had. It’s never something that I planned, like going from being able to walk to only being able to go short distances and eventually needing help to get around because the HSP (hereditary spastic paraplegia), among other issues, that has been steadily progressing was making my legs numb and hard to control. Which is why I’m now in a wheelchair.

If you have ever been hypoxic, you know how rough that can be. It’s like your mind and body are full of lead. You can’t think straight and you have no energy. I often felt sleepy, disconnected and unable to even focus on anything. It was like I was just sat with the world going around me and I couldn’t even follow it. It’s hard to explain the fogginess I’d been feeling. It was the worst feeling I’ve ever had. The way it affects your whole body all at once, then your body tries to compensate and that takes even more out of you.  I remember being told by doctors that I wasn’t going to make it to 30 with how my health was. My 30th birthday was the biggest triumph, I’d defied the odds and every year since is another reminder that one thing I’ve always been really good at is survival.

It’s not been easy. I’ve struggled to come to terms with the whole situation and how self conscious the tubing felt on my face. How other people reacted to it, some were kind others were not, and how different things felt when my disability went from invisible to plain for all to see. Before, I was able to hide how I was feeling and often faced people who didn’t understand what I was fighting and all of a sudden it was obvious. The hardest thing was when I saw someone who knew me before I was sick and their reactions to this new way I was living. It was overwhelming how many of my friends and family supported me and it really made getting used to things so much easier. My psychotherapy last year was a real revelation in of itself. You never know quite what you’re capable of until you try. 

Recently, we found an old card in a box of mementos. I’m one of those that keeps old cards, letters and things like that. They’re all things that when you need a reminder it’s definitely a reminder of the things you want to hold on to. Seeing Nan’s handwriting again, I could almost hear her voice and I did have a little cry. I miss her. I really do and it’s something I guess I’m just going to feel. Though her words of encouragement have helped spur me on a bit. 

I’ve been having appointments recently regarding my hernia and getting the thing repaired. Since the initial consultation, we were worried that perhaps my lungs wouldn’t be able to cope but the recent appointment with the anaesthetist has given me more optimism. Not entirely sure when it’ll happen but it’s definitely in the pipeline. The main thing I’ve got to do though is try and stay as well as possible and get my body ready for this. I know when it happens, Nan will be there and watching over me so I’m not as scared. 

Hopeful of things to go as we need them now.

Til all are one

Wendy xx

Ableism.

​If there is one thing that really gets my back up, it would be ableism. This weird belief that by being disabled, it somehow diminishes our need for anything that can actively make our lives easier or less of a painful slog. I’ve had my illness for a long time and as it’s progressed, I’ve seen more and more discriminating behaviour. Whether it was people pushing past to get their buggies on the bus before I could get my wheelchair in or someone actually deliberately nudging my wheel while waiting in a bank queue. Yeah. That happened. I had to learn very quickly how to “self advocate” and hold my ground against anyone who thought they were more entitled than I was to something.

Ableism is a harmful thing. Like any kind of prejudice. It’s difficult and it can be extremely cruel. No one wants to be disabled or unable to take care of themselves or do things they used to love. It’s hard enough to live with any kind of disease, whether it’s physical or mental, but when we have to spend time explaining ourselves to people who don’t have the capacity to just accept that some people just can’t do what they expect of us.

My journey through going from a somewhat normal life, just having to take inhaler and being able to live my life as I wanted to, to what my life is now hasn’t been easy. Not being able to feel the wind in my hair while riding my bike or being able to sing as much as I want or play the flute. These are things I miss. I look at old pictures of myself 10+ years ago and I feel sad. Like that girl in the pictures was a completely different person and I’ve been almost grieving for that person. 

It’s hard enough to feel like I’ve lost that person and in a lot of ways my freedom. I don’t need to spend time explaining to someone why I’m in a wheelchair or on oxygen. Being told by an elderly lady about how she didn’t need anything to help her get around at 84 while on a bus was nothing short of insulting. If you see someone who has either a visible illness or a more obvious disability, please remember, we are trying to keep ourselves going and don’t need to be treated like a freak or be questioned and shoved aside. We just need people to accept us and treat us like equals.

That’s all everyone really wants deep down.

Til all are one.

Wendy xx

I'm back.

Sorry I've not been as active as I'd like to have been over the last few months. After finishing my psychotherapy, a really bad infection and a load of other things in between, I've just needed to centre myself and get my mind back in to some kind of order and figure out where to take this journey through my life and what kind of role the blog plays within that. I didn't think for a moment about giving up, this is, and always has been, my place for my thoughts, my worries and everything else in between. I remember back where I started this and where I was both physically and mentally. It's astonishing how much has changed and even when I was at my lowest ebbs, how there has always been a learning curve and I've drawn wisdom from experience. It's something that I've always done and my therapist even said it was such a unique, astute ability to learn to get back up and try again. It's my armour. 

I think I've probably had the best Christmas and New Year period in a long time. I'd never even realised how bogged down with things I was until I'd done my psychotherapy and allowed myself to finally accept a few things. The most important was that there isn't always a logical reasoning behind everything, no matter how hard we search for it. Sometimes it's OK to just shut out the world from the world outside and just focus on the world inside you. Listen to your heart beating. Just emptying your mind and just trusting your instincts and get that sense of "Clear Mind."

For those who don't understand what I'm referring to, in the Yu-Gi-Oh 5Ds anime, the main character Yusei is struggling to overcome something that happened and he spends a lot of time trying to face the problems that he was having with trying to beat a particular opponent and it ate away at him until he was shown the way to this state of "Clear Mind" in which he was able to accomplish his final goal, the Shooting Star Dragon. There a line he uses when he finally manages to just let go and let the wind guide him. "All my fears, all my worries. They're all just Stardust." How this relates to me is that like Yusei, I had to just let everything go from my mind and just keep moving forwards. It's amazing how that feeling of clarity can really change things. Maybe it's just a case of stepping back and looking at the bigger picture.

Not everything in life is going to make sense. I've spent most of my life asking "why" and trying to work on fixing the things I thought I'd done wrong or caused, some of those were things that I couldn't have had any say or part of what happened or how people behaved towards me. Learning that it was more to do with them. For me, I'm just taking it all as a learning curve. Regardless of what happens, I've always taken it as an experience and a chance to learn and grow. I often found situations where there wasn't a clear explanation difficult to understand and that was frustrating.

I've always been a user of divination, sometimes that can give you some guidance. I did a reading recently with my runes and tarot. I've done them for years as they can give me guidance and insight to what's going on, my thoughts and situations. I'm still working on trying to improve things, even trying to get some problems sorted that have been going on for some time. Biggest thing right now is getting my rather uncomfortable and sizable hernia repaired. When we first found it, just weeks before Covid-19 started, it was the size of an acorn. Just looked like my belly button had popped out and it only hurt sometimes. Now it's about the size of a small melon, it's very uncomfortable. I'm currently undergoing tests to determine how to sort this safely. I'm hopeful that things will be sorted soon and I trust the hands of the doctors helping me.

I'm still fighting. And that's not going to change any time soon. 

So, I'm hoping you are all keeping well and that 2022 is going to be a better year going forward.

Till all are one

Wendy xx

Challenging Myself. Becoming a Survivor.

One thing that I'm doing through the psychotherapy is learning to look at the things in my life that I've probably spent too much time trying to find answers to and see them from a different perspective. As people, we naturally spend most of our time trying to make sense of chaos and work out what part of it we played. Some people just dismiss the responsibility outright and pretend that they were the victims. Some, however, internalise every single thing, each time they were hurt or something bad happens and convincing themselves that it was their fault. I'm not saying that I'm perfect and have never done any unkind things, because that would be a lie.

I've always been of the latter state of mind and I think it's something I started doing as a child because I was blamed for many things that I didn't do. I started believing that everything bad that happened was because I did something, even when it wasn't really anything to do with me. When one of my friends witnessed and spoke up about some things that were happening at home, I was blamed for telling people when actually, I'd been begging my friend to not tell people what she saw, which probably in retrospect must have been a massive burden on her and now I'm older and able to look back on that, I do understand that they must have been as upset to see what was happening as I was experiencing it. 

I think the reasons that I struggled with so many things for so long wasn't me choosing to wallow in the past, but more to do with how I internalised everything that happened to me to the point where I honestly think I believed that I deserved to be mentally tortured by those events and it was all my fault that things happened. I think the torture of reliving things in your mind can actually be more damaging than the event itself. I remember individual moments in my life with such clarity and I have nightmares where I'm right back at that moment, kind of like watching from a 3rd person perspective? Watching my younger self and even though I'm sometimes screaming at her not to go to the certain spot where something happens and watching it over and over again. 

Since therapy it's been easier because I've managed to break down some of the things I've had happen and how I coped and survived. Because that's what I always do. I've always managed to find myself a way to escape, give myself some time to regain my composure and face things as they are. It's something that sits in my very core and it's how I've managed to get as far as possible. Even if it was just allowing myself an outlet like screaming in a field or drawing and losing myself to my imagination for a while. If my body was stuck, my mind didn't have to be. Or I'd seek safety in another world and spend my time in the world of fictional characters where I could be who I wanted, do as I pleased and not be bound by my physical limitations.

Another thing we discussed, and this is something I always found confusing until now, was how I did academically. How at Weston Road, I was always in the lower classes and often got poor marks (except in my SATS exams where I managed to surprise practically every one, including myself) but as soon as I moved to Rising Brook in Year 10, after nearly 13 weeks of being out of school after my first mental breakdown, I was suddenly in top classes and achieving grades that given my academic background at Weston Road, no one thought I'd ever get. Maybe it was because at Weston Road, my only goal was to get through another day, another week and spend the weekend with friends and decompressing my mind. 

When I started at Rising Brook, it was amazing. I flourished because I didn't feel like I had to focus my attention on keeping safe and I didn't have anything holding me back. I actually started to enjoy school for a while and did really well considering that they didn't even think I'd finish school at Weston Road. I think that was what gave me the drive to do what I needed to and to keep reaching for my goals. It wasn't always easy and there was a point where I was close to giving up because I couldn't escape my own head. I had a lot of counselling and talking therapy. 

So the take away here isn't that I'm "cured" or will never feel depressed again but more of my ability to now take what I've learned and to understand better ways of coping which aren't toxic or dangerous. I can't fix things for that little girl but I can give her a future.

Til all are one

Wendy xx

Safety and Smiles.

I've embarked on another course of psychotherapy. It's been really tough these last few weeks (and months) and I'm still struggling to get my head around everything. I've not exactly had an easy ride and it's no surprise that I've been closer to breaking point than I've let on sometimes. Actually at its darkest, the thoughts of doing something awful has been harrowing at times and sometimes it's been difficult to explain or figure out what to do.

It's interesting to understand myself a lot better and figure out ways to cope with things. The psychologist explained to me that as I experienced a lot of diffcult and socially isolating situations, I learned that my way of getting some respite from the world was, and often still is, the escape to other worlds through books, cartoons and games. It was in those worlds, I could safely escape and explore. Whether it was at Hogwarts, Cybertron or even the Island of Sodor, I could find adventure and afterwards return feeling better about things. I often find that during periods of stress or uncertainty, one way to soothe my mind is with a pencil and a piece of paper, 

I think everyone needs that soothing and special place to retreat to. When I started following the story of a little boy called Lincoln and his lovely parents, I felt inspired by how brave he was. I've seen so many children who have illnesses and they just take it without complaint or the need to broadcast every single twinge to strangers. It's amazing how resilient they are. Lincoln has a disease that means his bones are very weak and has just had surgery. I wanted to gift him and his family something that would last them a lifetime and would be as unique as their little one is, choosing a character that has meant a lot for so many children since his creation (by the parent of a poorly child) in the 1940s. Painting Thomas the Tank Engine was such a release and I was able to access those wonderful feelings as Thomas has always been a place of safety and happiness for me and many other children. You can follow Lincoln's story on Facebook here. 

After the sessions it's important that I find those wonderful places and hold on to that feeling, doing something involving, like art, and let my imagination free is also very important. Art really does heal you. I'm trying to embrace that right now, especially upon hearing that my paternal grandmother contracted Covid and passed recently. I've had a hard time grieving process for her because there was just so much crap with the "other" family and as a result, I was pretty much barred from any kind of closure. I'm trying but sometimes it can be hard to push through the sadness and dosconnection I feel. With both of my grandmothers gone, it's like I don't really have a connection with my hometown anymore. I guess I always felt better with that connection and knowing they weren't too far away. With my art, I've been trying to put that feeling in to something beautiful and positive. I don't want to forget either Nan and they're always a part of me, the safe place I could find myself when I felt scared or alone. It's just hard to accept that both are gone. Stolen by covid.

It's taken me nearly a month to kind of process it and open up. Maybe it's because August was not a great time for me. Last month, I underwent some pretty intense dental treatments on my wisdom teeth. One of which had to come out (another one is probably going to end up the same way as it's not been happy since treatment) and because this is me and my body, that didn't exactly go as planned. As a result, I'm now waiting to get an appointment to have a minor operation to remove the large broken root and infection that has been left behind. My face is still sore and swollen on one side. So hopefully that will be sorted soon and my face won't throb any more. It's been a bit of a hectic month so I'm just kind of processing it all still. I'll get there though eventually.

Til all are one

Wendy xx

More Complications

Ever find something out and not even be prepared for it, yet it making sense at the same time? I had one of those moments recently and my general response was "great, just something else to contend with". It turns out, on top of everything else, my adrenal glands have stopped working properly and I will never be able to come off prednisolone altogether.

About Prednisolone: (AKA: pred, the devil's tic-tacs)

Prednisolone is a medication used to help control asthma. It's an oral corticosteroid and believe me, it's not nice stuff. Prednisolone has been so problematic but its literally what keeps my lungs in check, or at least partially. I've been on the stuff for literally years now, whether it's post admission or daily maintenance at the lowest dose possible and it has literally taken a heavy toll on my body.

Osteoporosis - otherwise known as brittle bones disease. Meaning that I am more likely to crack or break bones and it has erroded parts of my spine. My back problems started during childhood but now they are getting worse due to my weak bones. 

Reflux - something I always had a genetic predisposition for but now it's something that I'm dealing with daily.

Liver issues - something we don't exactly understand (yet) but we are monitoring it.

And now 

Adrenal gland failure - this only came to light recently. Those little glands do a lot of work and produce cortisol naturally. Basically mine have decided not to work anymore so my body relies on steroids to function. Missing any doses of prednisolone can actually be lethal. Adrenal crisis is scary stuff and it's something else I've got to be careful of. It's all about figuring out how best to manage it and always making sure to take my medications as needed. 

Whats scary is that there's been times where I had forgotten to take my meds or the pharmacy didn't deliver them on time (the worst time was just before Christmas and they "lost" my prescription, including a prescription for morphine..not at all fun). If they did that now with the prednisolone, my life will be in extreme danger. It worries me a bit but I am trying to take everything as I usually do, in my stride. I do have to be more careful and keep an eye on things, signs that could be worrysome and things to keep an eye on. 

Another thing that I have been doing recently has been getting my teeth checked. I have always had a phobia of the dentist, having ANYONE touching anything in my mouth just makes me feel all icky inside. My teeth in themselves aren't bad. Considering all my medication and general health its little more than good luck that I've not got a mouthful of fillings and rotted teeth. I've just been having issues with my wisdom teeth again. I won't go in to too much detail now but the right side ones are being particularly troublesome but hopefully we can sort that out soon. I'm worried because, due to some phobias that I've had since I was small, I don't want to freak out. 

I'm trying to keep as calm as I can. During the heatwave over the last week, its not like I've felt like much anyway. So forgive me for smiling and enjoying the rain as it rattles through the trees in the back garden, accompanied by the sweet notes of my music boxes. I find them soothing and maybe they may help during my appointment. 

Til all are One

Wendy xx

Hope and Home

Last month, I'll have been on home oxygen for 7 years. I wasn't even aware then how much it would change my life, for the better or how much I was struggling before it was prescribed. Before it was given to me, I was so tired, so out of it and spent most of my time sleeping. I wasn't really able to do a lot and to be honest it was like I was just fading slowly and that was it. When I started with oxygen and when we did tests to find out why I was struggling, the doctors then said it didn't look good for me and we just didn't know what was going to happen.

I kind of drifted for a bit. I'd just get up and go and wander around blindly, didn't really want to do anything or talk to anyone.

It's fair to say that I've definitely beaten the odds there and I'm still carrying on with life. Being told that there may not be much more we could do and even having some doctors even telling me that I wouldn't be around too long (quite wrongly, if I do say so myself) meant that I had been forced to face my own mortality and decide to defy anyone who said that I can't. I don't fear it, I've made my peace with certain eventualities but at the same time, it's made me more determined to keep going and keep making my own decisions and choices. 

When I moved from my old flat, I vowed to make changes to how I lived. Stopping myself from destructive habits and cutting energy drinks out. I still remember when I moved here. After 5 years in Abbeydale, the main thing that hit me was just how quiet it was. Being able to hear my own thoughts for the first time in months and looking out at the stars, thinking how bright they were. I've been here for nearly 6 years. Which means that after Cull Avenue, this is the longest I've ever stayed in a place. Probably the first real "home" I've made for myself (aside from family homes), Jace and our guinea pigs. 

I do have fond memories of the other places I've lived in, even the YMCA, but now that I think about it, the HMO (house of multiple occupancy) or flat life never really suited me. While it's nice to have a door you can lock behind you, I think that life in our bungalow has been better for our needs, having a real kitchen helps too. 

I'm just hoping that the whole pandemic situation improves. I want to believe that eventually things will get better. I want to hope that we can get some kind of normality and we can start doing things again.

Guess there's a reason I've got my "hope" tattoo isn't there?

Til all are one

Wendy xx

Where Did I Go in Year 9 (part of my back story)

WARNING: Before I go in to this, this post contains graphic descriptions of suicidal thoughts and self harm. Some people may find this upsetting or distressing. I've always urged people who feel that way to try and get some help if you're being bullied or have suicidal feelings.

Over the years, there has been a lot of speculation and people asking about a certain time in my life. It's not usually something I like looking back on and well, to the people who didn't know me that well, it was all a bit of a mystery. People have asked me what happened and why and it was something that I couldn't really give a clear answer to, some of the weeks leading up to it, even I don't really remember (probably my mind locked it out and to genuinely honest, it was probably better at the time). So, here goes, what happened to me and why I suddenly left Weston Road High School for good.

To fully understand the whole thing, you first have to know one simple truth. For the nearly 3 years that I attended that school, I was miserable. I hated it. I was bullied, a lot. And it wasn't just the simple bullying most kids endure, this was daily torture by a good number of people and I didn't understand them, nor did they really understand me. Maybe we should look a bit further back?

I was a bit different to my peers and even during primary school, I found it hard to fit in with other kids my age, especially with the other girls. We didn't know why. I just couldn't click with the girls who were interested in playing with baby dolls or Barbie. I just didn't find myself too interested in Baby Born or Tiny Tears (i had a Tiny Tears but never really liked playing house with it, I was more interested in drawing on it or overfilling so the water ran out of the neck) but I was happier with Transformers or Biker Mice From Mars figures. My friends were often boys. I preferred climbing trees and riding bikes. I had interests in the arts and loved playing the flute.

Another thing you need to understand is that I have never been interested in sports, in fact I am probably one of the least athletic people out there but unfortunately where I grew up, most of the popular kids were athletic and loved sports. I mean, that's great if you can find pleasure in something that seems so alien to me. It doesn't help that I inherited a condition called Spastic Paraplegia, along with spinal problems as well. This condition affects my back and my legs. I used to walk "funny" and my gait often caused me to fall over. It was made worse by a teacher at Weston Road who was sometimes as bad, if not worse, towards me as the other kids, despite my mum explaining over again that it wasn't my fault that I was so bad at her subject (PE...) but it was a physical, mechanical problem. That woman was adamant that I was just "lazy and stupid" (yes, she said that a few times, to my face as well). 

It was during my last few months at that school that I found out what exactly I was good at. Art and music were my favourite subjects and I would relish those brief lessons. Unfortunately though during the "Cull Avenue" period, I wasn't exactly happy at home either. Now, there is a lot to unpack here and I won't be picking all that apart here, purely because it wouldn't be appropriate to discuss someone else's mental state or situations in a public place. It wouldn't be right and certainly wouldn't be fair to say anything about them. All you really need to understand in that scenario is that I was struggling at home too and spent a lot of time in my room. 

So when we left Cull Avenue when I was about 13, nearly 14, I really was hoping this would be a catalyst for a change. I was given 2 weeks away from school so that we could focus on both moving house and my operation on my eyes, being a teenager with strabismus didn't help me at all, and we hoped that I could just be enrolled in a new school. This didn't happen and for 6 months I would have to commute from one side of town to the other. When you're already kind of burned out after a long day of school (leaving the house before 8am, returning about 5ish), you really can't face a bus full of abusive peers (admittedly most were gone before we left the town centre but still about 40 extra minutes there amd back was not fun or healthy) before arriving back at home with the house to yourself (alone with your thoughts and anguish), that was when I really started to do things that I'm not proud of and self harming.

By year 9, there were other things going on. Things that I couldn't tell adults about. Things that shouldn't have happened to a 13/14 year-old in a place where they should have always felt safe. I was told to keep quiet while these boys hurt me and that no one would believe me anyway. When I did try and tell someone, they found out and I was "punished" by having rocks smashed in to my legs and told that if it happened again then it would be worse. It took me until I was 19 (and some stiff drinks) that I told my Mum what happened. 

I've selfharmed on and off (admittedly the last 5 years I've been "clean") for years. Whether it was starving myself to maintain a weight that was unhealthy (which was a result of a long sickness), cutting or other things, I would often use that as a way of letting the frustration and self hatred out. Selfharm is a symptom of something greater and often when people do it, they're branded as "attention seekers" which is really not the case. Nor is it an expression of a wish to die. Sometimes it's a way of getting back some form of control over your own body or a way of expressing your frustrations in a way that you can choose. For me, when I was cutting, it felt like a release of all that pressure, all that anger and sadness. I would often do it in places people couldn't see under my school uniform, I was terrified that people would find out and tell social services or blame my mum for all of this when really she had no idea what I was doing. 

I started going to my Nan's after school so I wasn't alone, I never really talked about what was going on at school but I think my Nan, Aunt and brother knew I was unhappy at school. I was happier at home though, so at least I got some kind of break but I think by the time the decision to take me out of school (after one day that I was sat on the stairs of our house refusing to move because I just couldn't face it, the Education Authority were great but we decided to give the school one more try, about 2 weeks later we decided I was done), I was a wreck. I was lashing out at that point and I didn't care anymore. 

I think the thing that fuelled the rumours surrounding me leaving so abruptly was that there had been some really tragic situations which were similar to mine in the local area where 2 young ladies had sadly taken their own lives. Everyone wondered if I was going to be next and it's hard to admit that had it been different, I may well have been. I'm just thankful that we had the right people supporting us through that because when I think on it, I always think about how my family would've been the ones to suffer for it. So my summer holidays that year were longer, but it gave me time to get my head together and I was started at Rising Brook for my GCSEs. 

So, yeah, if you were wondering what the truth was when one day, I kind of just vanished one day. It was a rough experience but in some ways, I'm kind of glad as it did make me stronger. 

Til all are one

Wendy xx

So, 2021?

I won't lie, 2020 was a heck of a shitshow (I don't like to swear but this year...it's been rough). The whole Covid-19 saga was mismanaged and so much more difficult than it needed to be. I won't go in to my whole views on this, to be honest it would've been simpler to say that if the government had listened to experts, not their bank balances (or the orange American Idiot) then maybe we wouldn't even have had a second wave, and if they'd learned lessons maybe the virus wouldn't have mutated. Last year we were so close and then everything went to hell around September. It's frustrating as we nearly beat it and were so close. Too many people have died as a result and it's been galling to see people not following the rules to keep everyone safe. I get that we're all frustrated and want some normality but when you see your local rates skyrocket you just have to wonder, do people even want it to end?

Here we go, Lockdown 3. It's a couple of weeks in and I'm just finding myself getting more and more unsettled and sick of this now. I've not been allowed out for months as I've had to shield, I'm missing my friends, family and the freedom to just go outside, ride around and do simple things like shopping or meeting up with people. It's knowing that it's the right thing to do that keeps me going. After all, my family has already had a tragic loss from the virus, they shouldn't have to have another. Nan wouldn't want me taking risks either. It's still kind of raw. When someone you love dies, it's like something has been forcibly torn from you. I've never really gone through this before, it's still kind of like a horrible nightmare and there are times when I think about it all and feel a surge of sadness and just wanting to go back to those old days where I would follow Nan like a shadow. But the door closed on those days and now I feel like all I can do is watch through the window. 

I've been so quiet recently because I'm still going through the grief process. I usually end the year with a post summing everything up but I'm struggling to find the right words to say. I'm still hurting, I miss her so much, even harder that I couldn't see her for too long due to my illnesses. When you have a number of illnesses it's hard to balance them properly. Sometimes you just can't. I have to plan everything, carrying oxygen and meds. I wanted so much to be at the funeral. It hurt that I couldn't go but I know my words were there. Christmas Day I had a doorstep visit from my mum and she gave me something very special, a locket with some of Nan's ashes, yesterday a keychain with her handprint engraved on arrived. It gives me comfort to have them, like she's here with me. I keep her under my pillow so she's there while I sleep.

I think it goes without saying that my mental health hasn't exactly been too good recently. I'm struggling with the limitations and changes my body has. I struggle with the fact that even getting up and transferring to my chair can be tough. My back recently has been bothering me, it's difficult to explain what happens but sometimes I get spasms that start at my neck and run through to my hips. The thing with Spastic Paraplegia is that I can't comfortably have my legs straight. This has been an issue ever since I could remember (kind of hard to forget when your Mum had to forcibly stretch your legs out several times a day, ouch!) and as a result, if I sleep with my legs straight for long periods, well you can imagine it. It's rather rough. My asthma is flaring too so I'm finding things a bit tiring right now, thankful though for Animal Crossing as it's been a welcome distraction and it's been good to kind of get out of my own head for a bit, even if it's just an avatar running around a make-believe island. 

Last year, I had an infection and it lasted for months, I'm just hoping that this isn't going to try the same trick. 

Til all are one

Wendy xx

Acceptance.

I'm still trying to make myself accept what happened to this year and how badly the virus affected so many families and it continues to do so. To say that 2020 has been a difficult year would be a massive understatement and it has definitely tested me as a person, my determination to keep going and my relationships with people. Its been hard not to be able to go out and see my friends and family, its been mentally exhausting living between getting supermarket slots and trying to get the most out of a 95 item basket limit and worrying when I couldn't even get anything and had to rely on the food parcels handed out by the government, which only really give enough food for one person when there are two of us here. I've felt isolated as the lockdowns and shielding have both limited where I was able to go and why. Over all, its been a year where I have felt more contained than ever. 

I would be lying if I said that my mental health hasn't taken its share of knocks. I've started working with psychology and psychiatry again to get me back on track but it's a rough ride at the moment with frustrations about the current situation, plus issues with pain and my downstairs parts not quite working properly (waiting to see Gynecology about that, have a scan up coming as well to check on the cysts and fibroid, but we also believe that endometriosis has also been causing many issues too). I confess, my health has been an all-around issue and it's not something that I can physically do about it myself. So seeing specialists will be a big part of the next 12 months going forward. Of course, my asthma has been it's usual self, I'm just glad to have my own nebuliser rather than having to rely on going to hospital, which would've been dangerous.

The hardest thing for me personally, was that when my family was suffering at it's deepest, I wasn't able to be there in person. It broke my heart knowing that I couldn't say goodbye to my Nan the way that I would have wanted. We did mark the occasion ourselves by playing her music and I told Jace stories of happy times, Christmasses and Birthdays and even times when I was just happy that I was at Nan's and was happy. I'm just thankful to have those golden memories that I can look back on and smile. I also had some precious momentos as well and those are going to be treasured forever, just as they were when they sat on Nan's dressing table at Baggots Oak. She's not gone, not really. She's always going to be a part of me and now I feel like she'll be watching over all of us, much like when we were small. I know she is one of the people who made me who I am and encouraged me to be creative, musical and how to sew and do crafts. So thats how I honour her memory.

It's been hard and it still feels like a massive piece of me is missing. I want to wake up some days only to find it was all a bad dream and that shes safe in her home being cared for. It does get easier but it never really leaves you. I'd never really experienced grief for someone like this before and how deeply it hurts still surprises me and still makes me think "wow... I never knew..." And it's true, until you experience it for yourself you don't know in yourself how you would feel about it. For 32 years, she was always there. of I have to fogure out how to live without that safety net. I'm just glad I still have my Mum and Aunty Rose. They are the ones who have had to be strongest through all this and they made me very proud. As for me, I'm taking everything one step at a time. One day at a time. 

So for now, I'm just making the best of the whole situation and making sure we're both getting everything we need.

Til all are one.

Wendy xx

Coming to terms

It's been a week now. I woke up this morning, as I have done since it happened thinking "please tell me this didn't really happen, it was all just some horrible nightmare and Nan is safely at home." Then I look at my phone. Reading the call logs from that awful morning. In my 33 years, I have never heard my Mum's voice sound so pained and vulnerable. When she said the words everyone dreads right now that their relative has Covid. And it doesn't look good. They're on "end of life" care. I asked how long, thinking it could be a few days? No, not even that. I wanted to get there. Told not to as it wasn't safe for me, my Mum was losing her mother and didn't need to lose a child too. I sat holding a Jemima Puddleduck toy for over an hour as I cried.

Then outside everything went all calm for a moment. Like the world was paused briefly, it was quiet. It was so eerie. Moments later my phone went off again, normally I welcome the sound of my phone as it's a song I like. This time my heart just sank and I knew. She'd just gone. It was so instantaneous and without any warning that none of us could prepare or soften the blow. I cried most of the day after that. I'd have brief moments of calm, then put of nowhere, it was like a dam broke and there was no stopping until the tears were done. Heartbroken wasn't strong enough to describe how deeply we all felt this. It was like someone had cut off a limb or something.

It also stirred up this deep anger. This virus has destroyed so much this year. It's devastated families like ours and it could've been avoided or controlled months ago. I felt almost resentful towards the people attending illegal raves, tourist spots or protests, the people who didn't adhere to the first lockdown and probably won't adhere to this one, because those people think that they're above the law and can do what they want because it never happened to them or their families. Thinking about how selfish they were and how they contributed to our family's loss. Maybe that's why I'm so angry right now, knowing there are people who choose to ignore the rules and that they're not having to deal with the consequences. 

To be blunt. If you're ignoring lockdown and just doing what you want regardless, you are a prat. A selfish, stupid fool. I know some are staying with other family members during the whole lockdown but not mixing outside of that, that's fine as long as you're not just going between each others houses every day. Please just stay inside and only go out if you absolutely need to. Nothing is worth putting your family through this. Our family is having to say goodbye to someone we love so much and it's a pain we are living with. 

Please be safe out there. 

Til all are one.

Wendy xx

10 years. Still going strong.

 This post has taken me a long while to put together and get some coherence to recent events. I was planning a kind of grandiose celebration of the blog and the journey it has taken me on. Heck I was even thinking of revisiting the earlier posts and see where my life has changed since October 2010. Then things changed. Then I had to face something that I wasn't ready for. Then again, who would be ready for these kind of things. 

I was having one of those quiet moments of reflection and as often happens, I end up wondering something random. 28th October 2010, this humble little page was born. I wanted to show how I wanted to navigate my long journey of my life and the many changes I faced and endured, the wonderful people who have been there to help me pick through the tougher times and the many MANY wonderful times we have had. It's weird to think that I've managed to keep this going for so long and that it's reached so many people. I'm thankful to people who have reached out to me to say how reading what I've written has helped them, even in a small way. But I also wanted this to show my growth and be a catharsis though diffiuclt times. Writing this blog has been as much about healing as anything else really.

Now this is going to sound really strange but I'm also grateful in a way for everyone who ever made life difficult or miserable for me. Because of them, I learned how to self advocate and not let them win. I learned to be less sensitive. But they also taught me that not everyone is nice so it's extra important to be kind and help those you can help.They taught me to be tough even through diffiult times and to always know that I was more capable than anyone ever gave me credit for. I've learned to survive and learned to thrive but there was someone in particular whose hand guided everyone in the family with love.

Growing up, I was always close to my Nan, Dorothy. She really was a special lady and someone I always looked up to as a kid. She was such a warm person with a kind heart and the kind of smile that filled a room with light. She loved children, growing up us kids were the light of her life, including Daniel, who is 18 years younger than I am, and Richard's children Scarlett and Jack. She took so much joy in reading to us, nurturing each of us to become the people we are today. It was Nan who encouraged me to be creative and showed me how to sew and mend clothes (an important life skill) and how to cook.

One of my faourite memories of Nan is when she used to read to us. She loved Beatrix Potter and I think she told me the stories of Tom Kitten, Jemima Puddleduck and Mrs Tiggywinkle more times than I can say. Along with the original Railway Series and other classic fairy stories. Birthdays were always special and I particularly remember one where my Nan and Mum had made a pony cake for me. But it is the little things I remember well. Something about a beaker of cherryade, a Thomas the Tank Engine VHS (which fortunately I have found the ones we actually had on YouTube) and canned Macoroni Cheese that pulls me in to a bubble. 

With Nan, you always felt safe. You knew you were loved and she would take pleasure in everything you did together. Even if it was something simple. It didn't matter as long as you were doing it together. She passed away last week and our family is still reeling. Just doesn't seem true that someone so close to us could be taken away so suddenly and unexpectedly. Right now, I'm either crying or staring out of the window just wishing I could have one more afternoon with her. I haven't been well enough to go and see her in recent times due to my condition being so unstable. It hurts more that I couldn't be there to say goodbye before she went, but not even being able to go to the funeral due to both the new lockdown and Covid-19 itself. 

So, the takeaway here? Don't take your family for granted. Tell them that you love them. Tell them how special they are. Keep them safe, especially right now. Wear your mask. Don't risk going out during this new lockdown unless you absolutely have to. Because some of you are probably probably think "oh well its never going to happen to me or my family", doesn't mean they won't. And if it does happen to you, may you and your family find peace right now.

Til All are One

Wendy xx

Pain is annoying.

It takes a lot to admit to yourself when you're struggling. It takes even more to reach out and talk to anyone about it. There is a lot of stigma when it comes to mental health and with the current situation and all, it's even harder to reach out and talk to someone. Especially when it's someone like me who has always been of the mindset that keeping it to myself is usually better than taking up an appointment with a doctor who could be dealing with something more important. Thing is, I've never been able to put myself first. Maybe it's because I'm always too busy putting everyone else's wellbeing before my own and it's sometimes meant that th little niggling problems get ignored until they get to a point where I'm unable to hide it.

We already knew that my "down belows" were a problem. I've had PCOS since I was 16 and it's even put me in hospital, especially when a particularly nasty one burst and I felt so ill for weeks prior. It was then when I had my first internal ultrasound. I've had a fair few and each has shown more cysts as well as a fibroid. I also have a retroverted uterus (basically where normally a woman's uterus tends to tip forwards, mine tips backwards), but recently things have been more difficult. I mean my periods have always been erratic and painful, most women have menstrual cramps but this is on a whole new level. This feels like a hook pulling from inside my cervix and literally has me unable to move, considering the regular pain I experience as well. The doctors think its endometriosis, a condition where the uterine lining forms outside the uterus and causes scarring and adhesions. It's a grim diagnosis to be sure.

So, considering that and all my other problems, not to mention the fact that I don't want children as it wouldn't be fair to them or Jace with my body the way it is, the consultant and GP are thinking when it's safe to do so, due to Covid-19 and my general health anyway, it may be better to have a hysterectomy. It's not something I'm taking lightly. It's something that isn't without risks but it may be better for me in the long term. Still waiting to hear about my hernia repair as well, so that needs chasing up too. It'll mean my body may go through some very peculiar changes but who knows? Maybe it could lead to a better quality of life.

The other thing that has been getting to me has been the general pains I've been having due to a multitude of conditions all mounting up. I'd been coping by taking my Oramorph a bit more but that was inexplicably cut, something the doctor agreed was very cruel, without reviewing the long term morphine I use, Zomorph. I've been on 20mg twice a day for a long time and was started on it by a consultant. I've found it has helped and gave better control than tramadol was. Just as my body has taken a battering over the last 10 years, it's fair to see why that would get worse over time. The thing though with morphine is that it can be a dangerous thing as it's addictive and can cause some rather nasty side effects. 

Being in pain constantly is not fun. It's frustrating and there comes a point where you start to wonder if it's even worth it anymore. My mental health recently has been very bad and I'll admit there's been some moments where I felt like I'd had enough and just wanted it all to stop. Just to not feel like this for a little bit would be wonderful but unfortunately it's just so complicated. It's frustrating when people just assume that taking painkillers is the best step forward. The thing with painkillers (I really don't like calling them that as they don't really stop the pain but more like they mask it to make it more tolerable) is that there's so many things to consider. Chucking more morphine in to a person isn't going to make them better. 

Pain is your body telling you there's something not right happening inside you. Some people can deal with it better than others can but it's well worth saying that until the underlying cause of the pain is put right, it's never going to go away completely and it would be irresponsible to throw pain medication at patients with some false hope that they'll go away and get over it. Unfortunately there's too many people who have strong opiates thrown at them unchecked or reviewed for years on end. You have to ask the questions as to why such things are needed and see what else can be done. And sometimes its good to rule out the psychological side of things. 

That was interesting but worth doing because sometimes some people experience physical "pain" to stimulus that isn't there or for no real medical reason. I was aware of ruling this out early as I wanted to be sure that it wasn't my mind playing with me. It wasn't, we've seen the actual physical aspects of my conditions and know well that it's definitely medical. It still doesn't make it easy but we knew that we needed to look at this and get a plan in place. Since increasing my zomorph I've needed less oramorph but I've been having more acute pain in my lower chest again so we'll have to see where that goes. 

I'm just hoping nothing serious is happening. 

Til all are One.

Wendy xx

Catching Up.

August 1st, shielding has "paused" for now. I'm going to be honest though, I'm not sure still that it's wise to go shopping or anything like that just yet. I've been venturing outside the house, even if all we ended up doing was hacking at those shrubs outside the front door because they were getting a bit wild (so tempted to run out and attack them with a strimmer but common sense prevails). It felt so strange being outside though after being cooped up.

One thing I had hoped to attend, but it was cancelled due to Covid-19 was the annual Transformers convention TF Nation. Instead, the guys behind it did a virtual event called "The Big Broadcast of 2020" (named after an episode in the G1 cartoons) and it was incredible. Hearing from writers, artists to even voice actors of some of the original cast, even a bit with Stan Bush who gave us acoustic versions of "The Touch" and "Dare" from the 1986 animated film, which was just perfect. Of course next year (hopefully) we'll be there and it'll be a fantastic weekend.

For me, being inside for so long has been a bit maddening really. I am still a very active person (well as active as one gets when in a wheelchair) and I really like doing things. I think that probably annoys Jace as he's always catching me up to something and I am very protective of my independence. I've been independent since I was very young, something that I am very proud of. I enjoy getting up and doing things. I've always tried to fight for my independence and push myself. Through the pain and breathlessness, to me its a challenge to overcome. And it's not in my nature to give in.

It's been such a long journey. Not always easy, sometimes I've felt like I couldn't do it anymore. Admittedly recently has been a lot harder. I've got a nasty chest infection and pleurisy. Like many people with brittle asthma, my lungs are scarred, they don't like exchanging carbon dioxide and oxygen and deep breathing is currently extremely painful. It's hard to explain as many doctors don't understand how painful asthma and it's after effects can be. The worst thing is trying to explain to a doctor who doesn't understand or have the knowledge of me and my specific case and feeling like you weren't believed or treated like a junkie or an addict because they don't know exactly what this feels like.

I don't want drugs. I just want to not feel like someone is kicking me very hard in the side when I take a breath. I want to sleep without being awakened by pain, which stresses me out as I end up getting up early and not waking Jace up as it's not fair to disturb him because I'm in pain. I don't talk openly on Facebook about it, purely because if I was to post to my page every single time I felt pain it would be constant and I think that people would get annoyed with me. Besides that, posting about it all the time and not trying to do something to ease it, to me at least would be counter productive. I'd rather find a way of coping and a way to ease things. I'll admit, right now is difficult as I'm generally not feeling great but I'm getting through it. Kind of. 

I've had to have some very frank and honest conversations with the doctors and even with Jace to uncover the extent to how I was feeling physically and mentally. Even admitting that there's been some very dark and intrusive thoughts about things I find very hard to talk about. The thing is, people who have chronic pain problems, often finding them difficult to manage medically, sometimes struggle mentally too. Having complex chronic pain which is hard to handle is rough, it's tiring and it does eat away at you. I'm hoping that the tweak to my long term pain relief will make things easier to deal with. But we have other options to look in to.

Til all are one

Wendy xx

Shielding.

On that Monday morning (23/03/2020), it started with a text. And a letter. Both of them informing me that due to my many health problems that I was considered to be at extremely high risk should COVID-19 get in to my system. Meaning that if I was unfortunate enough to get the virus then there would be a very high chance that I wouldn't survive it. That in itself scared me. How could it not? This virus can and had already killed so many, even without the patient having complicated medical issues. It's just not worth the enormous risk. I then had to accept that for 12 weeks, I wouldn't be allowed to leave my home. 

I'll admit that at first I was annoyed. But I do understand that it's for the best reasons. I've done closer to 3 months of shielding. You thought lockdown and social distancing has been tough. People who have been on lockdown have at least had the freedom of a daily exercise but for us shielding it's been a case that we haven't been allowed out of our houses which has been beyond frustrating and isolating. I've not really blogged because I didn't think it would be of interest to hear how I spend the day's pottering around the house and doing a good clear of the living room area. 

I think the most annoying thing has been the lack of variation and no where has this been more evident than in the food we have. It's been nearly impossible to get a shop online so we've been receiving a weekly food parcel and occasional Morrison's food boxes. The only thing is that there isn't really much by way of variety. Or perishable items like eggs and cheese. Thanks to a friend, Karen, daughter of the lovely Penny, the cheese side of things is taken care of through a company called Mousetrap Cheese Shop. I've always loved cheese and trying new types so this has helped a lot. Not sure why cheese is something I like. I've always enjoyed buying different types and loved going to the cheese counter at the supermarket. Sounds like a weird hobby considering that dairy upsets my Crohn's but everyone has their pleasures. I've found some new ones that I've really enjoyed and become regular items. Some however maybe not so much. I brought a famous cheese known as "Stinking Bishop" and boy did that live up to the name! Upon unwrapping it, I'm not kidding, it actually smelled like my old black Vans (those things were so bad it was legendary).

I think the hardest thing about "lockdown" has been knowing that as lovely as it's been weatherwise, I've had to stay inside and not go out for little trips in my chair or even consider do anything normal like going to the shop. I still am not allowed to do much and still have to go by certain rules. Being in my home for 3 months without any time away has meant, as mentioned before, that I've been spending time improving the place and we've started getting some semblance of order, especially in our living room. All that needs doing in there is stripping off the old wallpaper and a lick of paint and it will look a lot better. Our home is precious to us and it's something we know we're lucky to have. It's also been something of a test to how strong our relationship is. So many relationships have broken-down but not ours. We haven't always had the easiest of relationships, due to distance and my disability but we've never lost sight of what's important to us. 

Til all are one.

Wendy xx

Introspection

Its been nearly a month since I was given the letter saying that I was to be shielded as I was on the "Extremely Clinically Vulnerable" list. It's not been easy as I have always liked having the liberty to come and go as I please. That being said, I would definitely prefer to be safe and avoid Covid19, which for me would be an almost definite death sentence, than go out to the shops or something so I am complying with it. 

All this free time has been giving me ample time to think. When I started this journey, nearly 10 years ago if you can believe that, I was in a very different place physically and mentally. I was feeling alone and wanted so much to be able to change that. I hated how poorly brittle asthma was understood and I wanted to show the world the reality of what I was going through and why I was finding it difficult to do what I needed to. A lot of people didn't want to believe what I was saying and didn't understand why what they perceived as "just asthma" was making things so difficult. 

The thing is, this whole thing has been a process. It has been full of change and personal growth as well as a few moments where things were really bad, I'll spare you the nitty gritty details. There's been battles that I've fought, won and rehashed to fight again. People have come and gone and I've moved on to a better and brighter home. My journey isn't completed though. My story isn't over and there are many things still to said, done and conquer. I'm tired but the only thing I can keep doing is move forward and that's what I'll do.

I know I don't post as often as I used to, probably because I sometimes find it hard to write about day after day. I mean, you don't want to read a daily slew of "I woke up, did meds and went back to sleep. Watched (insert title here) in bed. Got up and had a poop.." and so on. It's grating to see that kind of thing on Facebook, imagine if my whole blog was just that! I take my time over my posts and try and keep it interesting and meaningful. Even if I start a blog on Monday and then come back to it until it's ready on Friday. I also try and find positives to blog about because I don't like to complain all the time, which could so easily become part of these kinds of blogs, because I am actually a relatively upbeat kind of person. 

I've had people leave me mean comments but I've learned to be a bit more resilient and less sensitive. Heck I don't even reply to the nasty messages or comments as they're not worth it. They're usually just trying to get a response from me and I won't rise to it. I'll rise above it instead! 

Til all are one

Wendy xx

A New Threat.

Unless you've been living under a rock over the last few weeks, you'll be well aware of the COVID-19 virus that has been taking its toll on the world. Seems like a day doesn't go by where we aren't being told about unfortunate souls who are fighting for their lives, and their families' agonising wait for them to recover. Then you hear about the foolish behaviour of panic buyers, food shortages and people not able to get the basics, but it's also been a lot of communities coming together to help each other. The latter gives us hope and solidarity, we need both to overcome this and protect the vulnerable and elderly.

Fear and panic are the enemy. In the modern world of the 20st century, we have become increasingly reliant on living our lives in a bubble, accessed from a screen. We often don't even know who our neighbours are, let alone how they're doing. I do understand that we're all suddenly having our world shaken and it's terrifying that something like a virus is as vicious and incurable (viruses tend to come, have their fling then you (hopefully) get better). I do think the best thing that could come from all this is that we relearn the community spirit and how to help each other that our grandparents and great grandparents relied so much upon, except theirs was a war of munitions. Ours is biological.

People also need to stop stripping every morsel of food from supermarkets. Hoarding all the food, toilet paper and other things (or much worse, selling on essentials at a high price) is just selfish and greedy. It's sad that people are doing this and it's the vulnerable who can't get out much (or like me, not at all) who are unable to get some bread, milk or even food. And who really needs 5 tonnes of canned food?

Right now, the best things we can do is social distancing and self isolation. We all need to pull together and prevent this from spreading, maintain hygiene and protect our most vulnerable people. Make sure that we use the technologies we have to communicate and make use of Facebook and other platforms to forge communities. When the virus is finished, we'll need to pick up the pieces and share what we learned from it. Who knows, your community could be brought back together and we could start helping each other again? 

How good would that be? So, friends, please stay safe and let's all get through to the other side of this!

Til all are one.

Wendy xx