For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Thursday 14 September 2023

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

Tuesday 8 November 2022

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

Friday 14 October 2022

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 fa├žade, 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

Saturday 14 May 2022

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

Sunday 27 February 2022

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


Tuesday 22 February 2022

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

Tuesday 2 November 2021

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

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