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.

I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. 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:

I am young, caring and a very smiley. I have a lot of wonderful people in my life and these keep me going through the best and worst of times. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis. 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.

I went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.

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

Thursday, 1 October 2015

Piece by Piece

Maybe the reason I haven't blogged for a couple of weeks is that I have been looking for too many answers before I could do so. Its no secret that there have been times recently where I have been struggling to make sense of things going on around me, people and situations that have left me wondering why they are the way they are. We all have those times when even someone with the most optimistic outlook can wind up breaking down, struggling to believe that there is a way forward and I would be lying myself if I said that I never experienced it. My arms and legs are covered in scars that remind me every day that I struggled with stuff and it really got to me sometimes. These aren't reminders of wanting to die though (even if there have been times of genuine wanting for that) they are a reminder that even through the bleak and bad times, there was still a bit of light out there and no matter how much I tried, I couldn't let myself just give up and this is where asking for help became important.

I think that there has always been a part of me that has always looked for inspiration and solace that a fictional character can bring. I think my Sephiroth obsession started when I was younger and I needed a heroic figure to give me that nudge to move forward (and I was gutted when I realised that he was never a full playable character in the PS1 game) and even though he lost himself, there was always the possibility that would be that he could find himself. Just as I have had to do. Sometimes just having a friend to talk to or give you a hug and tell you it's alright is all you need. Sometimes it is the comfort of love and affection from a cherished pet. Or even the feel and smell of something familiar and beloved (like a blanket or soft toy) that can calm the sadness inside. I have a doll. He's called Sephy (based on Sephiroth from FF7) and he has been there for me through some of the scariest admissions (often cuddled close to me in resus or held tightly as I sleep), painful experiences and some of the toughest things I have ever faced. He was given as a housewarming gift many years ago when I first moved out to my own place and has been my companion for nearer to 7 years. He has been there from when my asthma started getting this bad and every bad time between. Right now, as I sit cross legged on my bed, near a cup of tea (in a Sephiroth mug, surrounded by Sephiroth things (my first ever model, mini models, a fan, candle and perfume)) he is sat watching me as he rests against some cushions (2 match my bedspread and 1 is a tape cassette) next to my nebuliser.

That is how I cope.

I think that a couple of weeks ago, I was lucky that my carer came in when she did. I felt so frustrated because I was tired (from having not slept), in pain (from a really bad infection) and generally feeling miserable. At this point, my neighbour had knowingly been torturing me with his music for days and even well in to the night at some points and he knew how much it was making me feel miserable. I don't get out as much as most and going out often means a lot of planning as I have to take the right amount of stuff with me, carrying inhalers, nebs and o2 everywhere as well as maintaining the right amount of pain relief with limited drowsiness. To be driven out by the "bumbumbumbumbum" of dance music (the bass of which rattles the walls, pictures and has even caused things to fall off shelves) and his sly nature (turning it down as soon as he caught a hint of the council sniffing around, to gather evidence, we had to be a bit sneaky this time around) meant that I felt as though I was stuck in this situation without any end or way out.

After a string of nights where I was only having 2-4 hours of sleep, I was physically exhausted. Emotionally unable to think straight. I think I just wanted out after that point. My eyes wouldn't focus, my head was pounding and I felt sick and unable to catch my breath. I warn you now, this is probably the most distressing thing I have had to write about but I feel that it is important for healing and so that I can show that there are ways to cope. I had been gathering as much of my meds as possible, being on opiate based pain meds and benzodiazapines means that I have access to a sizable amount of things as such in my home. I wanted to just take the lot and go to sleep. I had said vague goodbyes to the people I cared for and I had put some of my favourite songs on. I was ready. It was when the carer came in, held me as I sobbed and soothed me and called out for help from the police, social services and the medical services.

That night was spent with people coming in and out and they were close to sectioning me so that I could get some rest (luckily we decided that it wouldn't have to come to that) and get this infection under control. I had a visit with the police when it was still going on at 2 in the morning and they told him to stop it. All I could think about was how selfish I was being and how ashamed of myself I was. I was willing to let my friends and family go through pain just so that I could be away from what I felt was a huge thing. I don't feel that way anymore and I have no intentions of causing myself harm as I feel that now this has happened that things are getting done about the bleak situation. Admittedly the doctor on the Monday didn't help by prescribing the wrong treatment for the condition I have ("a little bit of thrush" is OK when its in the mouth or down belows, but in the lungs it is something COMPLETELY different) and the "relaxation techniques" fact sheet (sadly there was no "Bludgeon the person making you feel like this with the hardest object you have to hand" part so it really was no help) which was put through my shredder.

I do wonder if that person realises how selfish he is being by making that kind of noise and not caring that the was making someone else feel so depressed that they were willing to take their own life? Then again, I would hate to be nearly 40 and having to pick on a disabled girl in her 20s just to make me feel like a big tough guy. This person tried to destroy me and make me feel scared and driven away from my home. Instead, it has only served to prove my own sense of solidarity and strength as well as reminding me that even when things look at their worst, there are people out there who I can talk to.

This now leads me to the focus of this post. I have been approached by a gentleman who would like me to share the link to a helpful website. The Counselling Directory UK is a resource for people who are looking for someone to listen during a tough time or looking for help for someone they care about. I will be setting a link to the website via my little side panel as well so that anyone who needs it can find the link to this wonderful resource.

Wendy xx

Saturday, 5 September 2015

Don't Judge What You Can't Understand.

Getting used to my little fur-babies and finishing up on what has been a huge clear out (I didn't even know I had that much junk lying around but you know how it goes, put it in a box or a drawer and it gets left and forgotten about). I think I pushed myself a little too far and I am paying the price for it as usual. I'm still getting to know this body and what it means for me, the limitations I have to work around and there are always going to be limits. Anyone who could say "Well, it's -ONLY- asthma...." is obviously an ignoramus and doesn't understand exactly what it is like to be in my body. Knowing that I am not on my last legs is great but it doesn't make things any easier to struggle with. Would you tell someone who was missing a limb that "well, it's -ONLY- an amputation" or "it's -ONLY- cancer..." so why would you say the same with asthma? You shouldn't judge what you have no real comprehension of understanding, unless you have been there you have NO right and NO idea.

Please remember ASTHMA CAN AND DOES KILL PEOPLE. I have nearly died from asthma attacks on many occasions and I know how much of a knife edge it can be. People are so ignorant towards asthma because its been stereotyped as the illness that the "geek" kids or fat kids get. Its become a rather big joke actually and when it comes to a serious attack, no one knows what to do. Asthma isn't a joke. It is a real condition and to some of us, it is disabling. It is exhausting. It is painful. So please, next time you decide to make a judgement on someone's conditions, try and remember that it probably feels much different to how it looks. The best way to describe brittle asthma is, how a normal asthmatic feels during an attack is how a brittle asthmatic feels all the time.

The drop in lung function to under 40% has been one of the biggest game changers for me. This has only dropped in the last year or two and on my bad days, I struggle to get over 25%. This means that have on average about 1/3 of working lung and that only works to half its efficiency. So be patient with me if I can't walk too far, I don't choose not to, I just can't. Please try and understand that it takes me nearly 4 times the effort to do something that it would take someone else. Even getting up and getting dressed is exhausting sometimes and I even have days where I have got dressed and wanted to curl up and sleep. I have carers to help me, not because I don't want to do things, but so that things can be done safely and you can ask them, and I am sure they would tell you happily, I do try and do as much as I can every day. It isn't unusual to have them come in to find me flopped over in my bedroom or even on the living room floor because I have pushed myself further than I ought. I am not giving in or just sinking in to lazy habits at all.

Actually its the complete opposite. I am making steps towards making my move to Blackpool. I have a support worker and a housing officer who are working tirelessly to help me get there. It is a long process and it will take time, but every step is a step towards it. I'm getting letters from my doctors to support my reasoning and rationale (because if it was as easy as saying "hey, lets move to Blackpool" then I think a lot of people would do it in a heartbeat). But it does take time. My support worker, an ex nurse, has been chosen specifically to help with all of this and help me wade my way through it. She will be able to call upon her own knowledge and experience to say what my physical needs are and what I will need in a place. What adaptations will be put in and what help and benefits will be needed. Luckily for me, Jace has said he will look after me but we will look to see if any other support is needed as well. Some people think that getting carers in and support staff  means that someone will do everything for you and they eventually behave as such. They then give up and stop doing anything for themselves and are convinced that its because they're elderly or infirm.

That in itself is a bit of a vicious circle. Feel ill, don't do much, still feel ill, do even less, until you're bedbound and can't (or in a lot of cases, won't) even try and do things anymore. I am fighting my ass off to avoid getting to that stage because I don't feel that its a good way to go. Maybe its because I was raised to look after myself, but I can't sit around idle for long otherwise the depression starts and I get more and more frustrated as time goes on. Maybe that feeling has been whats pushed me to go beyond my limits and is now the reason that even as I am typing this, my whole body is hurting. There is blood on my pillows and the top of my duvet (from coughing I think) and I am struggling with my chest today.

It hasn't helped that a certain person drove me from my flat again with their music (this is getting really old now and I am fed up of not being allowed to relax in my own home) and I spent a couple of hours in town which was rammed, not great when you feel like crap and want to be alone to sleep. The good thing is that I have the right people on my side and they have witnessed what the situation really is, things are in the pipelines but I won't let anything slip yet just in case (because last time, he just turned it down while the investigation was being done, kind of obvious when you look at it). I wonder if this person actually understands the level of stress he is putting me under and whether or not he gets some kind of gratification in knowing that he is essentially bullying someone who can't fight back, then again, there are people out there who need to do things like that to feel "big" or "tough" and that in itself is pretty pathetic if you ask me.

As for me right now, I think I am going to watch some more stuff on my laptop, rest as much as I can and do a bit more sewing as long as the elephant stays off my chest of course!

Wendy xx

Tuesday, 1 September 2015

Ways to Cope

I have been having a clear out as of late. No reason really other than I was getting sick of the build up of clutter and random bits and pieces (namely paperwork) that seemed to congregate in my flat. The problem I find is that paperwork tends to mount up and even with the best intentions, you can end up with a whole pile of stuff lying around. Problem is, that paperwork tends to take up a hefty amount of bin-space but I am grateful to Natt's mum, Jojo, for gifting me with a paper shredder. Admittedly there has been something therapeutic about shredding papers and watching the confetti stream out. Actually, I use the shredded papers for animal bedding (and they LOVE it). It feels good to clear out some old odds and ends as I never realised how much had mounted up over 4 years. I actually found an old tenancy document from Redditch YMCA (I haven't lived there in 4 and a half years, seems like forever!) and I took great pleasure in destroying it as it is no longer needed or legally required.

I'm back up to date with everything now as well. Particularly things like bills. I admit during a period where I was feeling despondent in April meant that I started to fall behind. A quick clip around the ear mentally and I managed to get back on track. I think that sometimes it is my usual way of coping and I tend to shut off emotionally during times of stress and duress because I can't cope with the world and just want to close myself off from it all. It's just a coping mechanism. Kind of like when I sometimes talk to my models. I know it sounds daft but talking to toys is something I have done since I was a child and in some ways, it can be refreshing to have someone to talk to who doesn't laugh, judge or yell at you. They keep secrets too! Heck if my Advent Children Sephiroth could talk, I would be scared because he knows everything about me!

I guess sometimes I wish I could be like the kid in "The Indian in the Cupboard" who could bring toys magically to life. Except I wouldn't have a mini Indian warrior as a friend. I would have my Sephiroth models! I'm not ashamed of admitting that I do talk to them. I do tell them what's bothering me, sometimes its just to sound it out. I even make sure I have one of my Sephiroth models (as well as my plushie) with me when I go in to hospital to give me comfort and reassurance when I feel scared or upset. I have had to deal with so much on my own over the years so any way of taking the edge off it, even for a little bit, helps because there are times when I am trying to convince myself that I can do this when I am really struggling with it. I guess we all need that kind of thing sometimes and you can't hold strong for everyone forever and sometimes you need to have a moment where you let yourself fall apart and let yourself unleash the pent up emotions. And that is fine too.

Sometimes you have to accept that you can't keep it together. Stress is a very big issue for me as it can affect so many of my conditions and cause me so many painful problems. Stress can bring on my IBS and make it more sensitive. It can run me down to the point where my body starts to fight itself as well as whatever it is battling so I end up coming out in hives. Thursday night was horrible because the attack started at around 9 and by 11, I think I was just exhausted. It was the most pain I had experienced in a while, my whole right side felt as though it was burning and it still felt like that the other today (Saturday) and I have had what I think of as "aftershock" attacks. Think of an attack as an earthquake. It hits and when it hits it just completely knocks everything out of balance. Then afterwards for up to 2 weeks you can have smaller attacks (or even sometimes one that is bigger than the first) which wear you right down. Being asthmatic is an exhausting thing and attacks can have such a strain on your body. And if I haven't got over the last one, the next can be just brutal.

Unfortunately, when you live with someone upstairs who seems to think it's their right to make others miserable, that kind of gets difficult. This is a person who I think actually gets off on making others suffer for his own gain, but like all bullies, he is sadly mistaken if he believes that I am actually going to take this lying down and let him make my life miserable. As annoying as it is at the moment, its reminding myself that each episode is another entry in the diary sheets, and each recording is another piece of evidence (because we all know what he did when the knew last time (because it wasn't obvious at all) and turned it down while they investigated) that will get this situation brought to a close. Hopefully. I'm not asking for something unreasonable like total silence all the time. What I am asking for is to not have pounding dance music rattling through my home, knocking things off shelves and making the fixtures fall down and making me feel restless and annoyed. I went back to the council because although we did have an agreement, it got to the stage where it was constant on his part and I was getting tired of having to message him every single day (often a few times), but that is my say on the matter really.

I got some new guinea pig pups yesterday. Since losing Tigger, poor Bumble was all on his own and if you know guinea pigs like I do, you know that guinea pigs need the company of other guinea pigs as well as human companionship. They are very social animals by nature and they often become nervous and depressed when they have to live alone. The worst thing about how we lost Tigger was how sudden it was but that's how it happens when an animal dies due to stress related illness (because who wouldn't find the constant pounding of dance music being played at inconsiderate volumes stressful?) and it did leave poor Bumbles feeling a bit traumatised and even now, if he hears dance music he whimpers, which to me as an animal lover is awful to watch.

The new piggies are as usual little balls of amusement, cute and very friendly. I went with my mum and Dave to go and see what they had, we did originally pick out a couple of youngsters but they weren't ready to be sold yet. I had originally spotted a young pup on his own and thought "you are cute" and I was more than happy to take him on along with a slightly older boar (I think hes about 18-20 weeks old, so hitting puberty) who looked just like Scruff or Becky's pig Zell. He has been named Kaiba (a bit of a joke as he has blue eyes and white fur, hes a Blue Eyes White Guinea Pig!). He was a bit funny with Bumble and the younger pup, who is called Yugi (names from the original Yu-Gi-Oh anime, Yugi was small yet strong willed and feisty enough to fight for himself, Kaiba was a rich kid who was a bit of a loner at first but soon became more of a friend to the others and a rival for Yugi) and is a bit of a humper at the moment (there's always one isn't there!) but hes settling down and I caught them all nibbling and snuggling together.

The group already seem to be alright with each other, there was a little scrapping to start but that's a normal thing at first because like any other creature, groups have to establish a pecking order. It's a typical thing for the males to be a bit more feisty about it but it does calm down. I've had pigs in the past who were similar (the exception being Hope who had a tumour in his brain) and it does soon stop. The older pig, in this case Bumble, just has to keep the younger ones in place. Like Tenzou did when he was put with Bumble, Tigger and Scruff. It's a shame we lost Scruff so soon as I wish I had watched him grow, I wonder if he would look like Kaiba does now. I still don't know what happened exactly, he was popcorning around one minute and we found him dead as soon as we got back from the local shop, probably a period of 5-10 minutes or so. Never did find out how or why that happened but Tigger and Bumble, who were of the same litter, thrived and grew so that was a mystery really. Watching the new balls of energy and fluff running around the cage has definitely lifted my moods, even in the shop, watching baby guinea pigs bounding around is something I have always enjoyed. Especially when they come up and wheek to say "hello!!"

I'm going to take the next few days steady as there isn't a lot that I need to do now!

Wendy xx

Saturday, 22 August 2015

From Oddworld with Love

Finally! I got off my backside and re-did the banner for the blog! Well, all I really had to do was change the name after the title but it is now done. Gradually moving everything over to Jordan, just as I did when I changed my name the first time. I am happier now that my name has changed as I feel like it's something of a fresh start as it were. No, it doesn't change much of my situation but it makes me feel closer to my family again and that is what I really wanted the most after all. It does still feel strange but its like when I was getting used to writing Bostock instead of Fullard. Its a bit of a habitual thing and when I get in to the swing of it, that's when I will do what comes naturally.

I guess that is kind of what life is about in a way, getting used to new things and it is good to change a situation to what works best for you.

Don't you just hate those days when you really feel like you've been dragged up from the grave? I have been feeling like this for a few days (since finishing my last course of antibiotics) and well, I feel really rough! See this always happens, I go on a course of antibiotics (usually either Augmentin + Clarithromycin/ Levofloxacin) for a while and after a week or so, things start shifting. The problems begin when I finish the course. For the first couple of days everything is OK and I don't feel too rough but by the end of the week its like being back at the beginning again! It's really frustrating and its like never getting off of the endless treadmill of getting sick, get a little better, get really sick again. Doesn't help that the neighbour and his dance music was making me miserable as well, although the last few days have been quieter (apart from work being done but I can't grumble too much about that kind of thing after all) which has been appreciated.

I've been giving my poor little Bumble-baby extra cuddles and affection recently since he lost his brother. He has been really shy since and every time the music starts, the poor little boy keeps crying because it frightens him. Its a shame because he really is missing Tigger and I can tell it bothers him quite a lot. I have been giving him more attention and feeding more greens to everyone (including myself) which has been a nice change. The cute thing about today was when I was going to the shop, I opened the back door as usual and got a wheeking to say "NOO!! Don't leave us!!" from Bumble and when I returned I treated everyone to some green pepper (yes, they LOVE it) and I think I was forgiven. Although I am a bit concerned that Bumble is getting really clingy towards me, it reminds me why I had to get Patch a cage-mate because he was getting stressed and lonely (then again that time he spent away from me didn't help, Patch was always a bit of a Momma's boy). Today I let Loki (the softest bunny I have ever met) and Bumble have some floor time together. I wasn't testing to see if they could be bonded because housing a guinea pig and a rabbit together is about as advisable as keeping your child in a tank of piranhas (being a lot bigger, the rabbit tends to dominate the guinea pig and bully them out of food, kick them across the cage or peeing on them) but because they both looked like they wanted to come out and play. 

It was quite funny to watch them playing together, although I got an inkling that Loki is scared of Bumble despite the fact he is so much smaller. Although there was no fights or aggression between the two which was a relief for me. I also had a moment where I got to cuddle with Loki who was lying in my arms like a little baby (so cute!) and letting me stroke his paws softly. There are times where Loki has driven us mad (bar biting mainly) but hes a nice bun really. Very sweet and loving.

Its weird, he's been gone for a long time, but out of all the pigs I have ever had, Patch is the one who I had the closest bond with, Hope and Daj were joint second I think. When we first met, I had just lost one of my hamsters and I was in a bit of a mess because of stuff going on at home. I needed something to hold on to and love, and love me back. Zeke was a sweet hammie for the time I had him but he wasn't really the "pick up and stroke" kind of pet that I like. I went in to the shop and he was the last guinea pig. No one wanted him because he was a "Rex" breed rather than a "Satin". When I saw him, I loved him right away. We were both lonely and both needed someone to take care of us. We had each other. When I used to come home from College, I would come in to the entry (back when I had my old place and I lived in an attic) and I would get up the first stairs and I would hear him wheek. Getting louder as I went through the door and up the 2nd lot of stairs. Loudest when I was standing on the small landing between my room and bathroom. It was nice to have someone happy to say "Welcome home!"

I've been trying to keep my mind off things though. Maybe its been because I feel lousy that I have wanted to game more and more. I tend to like to game when I have been feeling unwell because it acts as a distraction. I am not running away from my issues by any stretch of the imagination, but by offering myself a way of not thinking about it, I can clear my head and keep it from becoming overwhelmed by frustration. Sometimes I watch films. Sometimes I draw. Other times, I write or come up with more ideas for stuff. When I do chose to play games though, I find that a game that is enveloping and imaginative will keep me occupied for several hours at a time. It's even better when they remake and revive something nostalgic. If you follow me on Facebook or Steam, you'll know that I treated myself to "Oddworld: New 'n' Tasty", a ground up remake of the PSX classic "Oddworld: Abe's Odyssey". 

The whole premise of the original game was to lead Abe and his friends from a meat factory, get ancient blessings from the local wild  life, oh and fart on command (as a kid, that was the funniest thing about the game). Rediscovered again, it was like being a kid again and I am enjoying it. Although the screams of "I SAID JUMP YOU BLUE BASTARD!!" have been a bit of fun for anyone watching and having to master the gamespeak again (annoyingly trying NOT to make a load of mudokens follow you through electric fences or meat saws). The original games were tough and they didn't spare that to make the new version, one thing I am thankful about really as one thing I liked about the original (as well as the farting and the later game's new skill of fart possession ("No other game has it, no other game wants it") and possessing other creatures as well as Sligs) was the fact that it was not an easy game. If you wanted that "good" ending, you had to really work at it! 

I just hope that they do the same for "Abe's Exodus" which was the spin off of Abe. The original "Oddworld Quintology" was centred around Abe's Odyssey, Munch's Odyssey (which didn't do so well), Stranger's Wrath and a 4th game which never came out (probably owing to the catastrophic failure of Munch). They are making a remake of the other Abe game and I for one will be looking forward to more fun on "Oddworld".

Wendy xx

Tuesday, 11 August 2015


Ever have one of those weekends where everything just seems to be stacked against you? I kind of feel that way at the moment as I have had a really rough infection which seems to be getting more and more gunky and I am just getting more and more exhausted as a result. It isn't helped when I have to put up with things that others are doing. The only problem with living in flats and underneath another is that there are bound to be times when we don't see eye to eye. It's not a bad thing, its only natural that sometimes we can do things that (without even knowing sometimes) that get on each other's nerves. Conflicting lifestyles and worldviews can be an issue and it is often one that is hard to deal with diplomatically. After all, one person may think that music we enjoy is "that bloody noise" and no party is right or wrong in that. I just wish sometimes people would understand and think about how their actions impact on others.

It's been a bit rough over the weekend because I have had two days running where I just want to sleep and a lot of my medication which is great for pain also has that kind of sleepy side effect (which when I can't sleep because people are playing music is sheer torture) so I can't really take it during the day. The result of this is that I am in a lot of pain and irritable because I am in pain and I can't even do what I should be able to because of the side effects and sleepiness. It can be a bit of a cycle and it gets me down so much at times because I really want to sleep and get better but not everyone sleeps during the day. I totally respect other people's right to do as they please and live the lives they want as long as my own rights are respected at the same time really. It does work both ways and I have always encouraged people to speak to me when they have a problem and then we can come to a compromise and not be at loggerheads. Arguing with people is a massive waste of time and energy. Sadly the stress of the situation was all too much for one of my guinea pigs and despite everything, the poor little guy didn't make it. I was gutted because I watched as his brother was trying to nudge him awake and I couldn't explain what happened as he couldn't have understood.

With the way my condition varies from day to day (some days I can be well and able to survive all day without having a nap or a lot of medication, some days I have to take more medication and am very easy to tire out) and often when I get a flare up like I have been having over the last few days itt can be harder work to just do simple things like walking around my flat or even going to the toilet and back. The problem is that even on my bad days, I do have to try and push through it and I try. I really do try. Even if its just a small win where I walked from one room to the next, its something I can say "Yeah, I did that myself".

I am actually thinking of going in to "Vlogging" or video blogs, as well as a written blog on my progress as things are starting to change and to be honest, I want to watch it go from what it is now to what it could be in a years time, for example because I want to see how I got from one situation to making things work for me again. It feels nice to be back behind a camera (cables and leads all over, different ports, types of cable etc) and I feel more like the Wendy I was. Maybe that person can still come back because she is still here and still giving me a kick up the backside to get moving. OK so the path ahead does still feel uneasy beneath my feet and I am scared that I am just going to fall down at a hurdle and not be able to claw my way back up. A  natural worry for someone like me so I hear, especially when they have already tried and endured so much and yet to keep coming back and saying "OK, that didn't work. What next?" Maybe its a case of where there is determination, there is hope. Maybe that's what I have to believe in for now.

I think its hard having to do all this again and again, being in a hospital and then having every test you've been subjected to before repeated over until you just want to scream! Each time someone new comes in, they have to redo everything and its like seeing a new (or old) consultant is like starting again from square one and that in itself is unbelievably frustrating because its like all those years of testing, jumping through all the hoops and doing everything they said day by day. I know its not going to be easy but it has to be better than how things are now and I have to believe that eventually I can at least get back some quality of life. I just need to believe in myself and not feel like I'm being set up for a fall here. I have had too many setbacks and too many times where I have almost given up completely and I think that part of me is scared of failing which means a bigger failure for not trying in the first place (if that made any sense).

I hope I am ready for this.

Wendy xx

Tuesday, 4 August 2015

Leap of Faith?

It's been a bit of a puzzling month with a load of appointments, some were booked ages ago when July was there in the distance somewhere, others were a bit of a last minute thing. The appointment I was stressing over was the appointment at Heartlands Hospital. When I last went in to the Alex, I was told that in no uncertain terms that basically I was going to die. This really messed with my head and I went through a lot of emotions and in effect I had been grieving for the life I could have had. To have that debunked and told that although there has been scarring in my lungs for a while, this was probably more bronchial changes rather than IPF so that definitely took a lot of pressure off both myself and my family (including my friends). The Alex will have a lot to stand up against when I am finished with them because of the physical harm they caused (not to mention the mental strain this put on me over the last 6 months or so).

To be honest, once I got over the initial shock, I was so happy again, everything was bright everyone was happier. Unless you have carried such a thing around with you, you have no idea how difficult it is to have a death sentence hanging over your head or only ever feeling crappy at best. I want to rebuild my life again and its the best thing knowing that there is a future for me. I have a future.

The main thing I have had to take away from this all is that I have had yet more assurance that what I am dealing with IS asthma, it is brittle and is probably going to have some effect over my life for as long as that is. I'm not ready to give up and I think my conviction and genuine wanting to set things right and get things back on track was obvious to anyone who could see. Maybe I expected too much from the initial consultation. Maybe I just want to get better so much that sometimes I wonder if that longing is only setting me up for a fall. A pred detox could be fantastic move because it would mean that we could move on to treating the worst of my symptoms (and what causes them). Its suspected that the worst of my problems stems from the spasm of my airways. Parts of my airway are damaged and I colonised Pseudomonas last winter which really didn't help me at all. If we can get those to stop or at least slow down a bit, I may have a chance of more of a quality of life. I may never be pred free or completely off o2 but as the nurse and doctor assured both me and my mum, if anyone is going to get me halfway back up that mountain, it is Dr Mansur and (as understandably hard as it is) I have to trust him and let him help me and I need to help myself as well.

Unlike previous attempts to do steroid detox, we are backing this one up with objective evidence, close watch of my peak flows and lung function and putting something else there instead. Something less likely to have horrific side effects (my weight is the one I am most worried about, but hey, I'm a woman after all) and I am willing to try anything at this point to be able to not be in pain or gasp for breath all the time. It's a shame we can't fix my back or my joints or I would be even as bold to try and get out of the chair. Maybe one day we will get there but for now, I need to focus myself on things I can actually achieve and work towards them.

What I want to achieve is a more comfortable way of living, it'd be lovely to sleep through the night and not wake up to chest tightness, wheezing and chest infections. I want to make a future with the man I love. I'm starting to believe in that being possible. And the people who know me know that I won't settle for what I can't believe in. The next month or so is probably going to be testing and hard work with appointments to do with my teeth mainly. Basically my wisdom teeth need to get gone and I need the tooth I broke headbutting an oxygen cylinder in the night (not one of my brightest ideas but I was asleep!), not to mention finding a week where I can go and sit and do nothing in Heartlands (a week away from home in a strange hospital in a strange town, I have my reservations but I am going to fight through them and get this over with. At least then it's done, dusted and doesn't have to be done again and again (she says) and hopefully, unlike the last few times I have been in hospital, I will come out having achieved something rather than being left to withdraw and nothing done with it (which the Alex seem to take great pleasure in doing to save a little bit of cash)).

I guess my head will be buzzing over with questions and chomping at the bit to get past it all and hopefully embrace a brigher, less wheezy future. Oh and if I could shift this chest infection I have had now for some time, that would be brilliant as well. I don't know what I feel about the whole thing and some days I am wondering if it really is just me losing my marbles (although I often wonder if I had them to begin with!) or is there even going to be a way we can work around this. If we can work around it, it them poses the serious questions as to why this was never done in the first place and what kind of long term effect has this had on my body and what will put that right? If it even can be put right. I am hoping for some answers to the huge questions and concerns in my mind and I guess maybe I am also trying to have low expectations because that way I can't be too disappointed again.

It's a heck of a leap of faith isn't it?

Wendy xx

Friday, 3 July 2015

Keeping Busy, Keeping Sane.

One thing I don't enjoy is heat. Summer is one season I don't do well with, heat and my asthma are never happy bedfellows at the best of times but when its too hot and the pollen goes up, my lungs don't like it. I've got to take extra care out and about because if I'm not careful the I will be one more statistic. No one nowadays should die from asthma, but unfortunately because of the way asthma is (or isn't) handled is one of the major reason.

I went out today, I had to get a prescription and a few things from town. I always enjoy a bit of a wander through town and it makes a change from being stuck inside. When I was on my way out, I spotted a familiar face. Because of my condition, I have been regularly seen to by the local Paramedic staff. They have saved my ass more times than I could ever count. This one guy had seen me many times from the YMCA and in my current home. He had placed cannulas in my arms, overtaken nurses and given me nebs and o2 and generally done what I needed someone to do. It was nice to see him and not be gasping. Since being on oxygen, I have been in hospital less. He even said how much better I looked. I never knew how much I would benefit from something that I never thought I would need.

One thing that seems to be an issue is that in my sleep, I knock my cannula off and sometimes my breathing is irregular. It's something to talk to the o2 nurse and the consultant about but there are times when I have to increase my oxygen to keep my levels up a bit. Its not been easy and there have been times where I have wondered why I am doing it but then I see the people precious to me. That spurs me on even when I feel like I can't do it. I don't realise it but I am actually quite strong and I like being able to take control of my own treatments. Whether it's making sure I keep up on tablets and nebulised meds but also when I have to, doing my home IV (although this isn't as common as the other things, I have to have courses of antibiotics IV but doing them at home avoids a trip to the Alex and being able to take care of myself). I think maintaining my independence has been the most important thing and even though I have a little help every day from my carers, I do still try. I try and make sure I have everything, even if it means riding my chair to the other end and getting off to go in to the kitchen.

I think that actually talking to my neighbour about stuff actually had a better effect than anything else. Sometimes I think you do just need to talk to people. Not everyone is unreasonable. Its been great the last few days, nice and quiet and I feel better now the stress is gone. I admit, posting my frustrations publicly probably wasn't the best way but in a way I'm glad I did because it meant I found the person (or he found me) and we opened up a dialogue. Sometimes that is all you need. I'm glad we managed to talk it through and take a mature route around and got a better result in doing so. Maybe people aren't as scary as I sometimes think. But that is good and someone being brave enough to be the first to say, well that has restored my faith in people a little.

It took a few tries to get the prescription through (pred was the sticking point as usual, probably because its something sometimes I need more of it than others, but after explaining it the doctor sorted me out) but it's done now so I can chill for a few days now. Today was so hot and muggy and my lungs really did not like it. I had a period where I was so exhausted that I just flopped and slept for a while. I think it was needed because when I woke up, I felt less dizzy and nauseous. I did make sure that I drank plenty of water as well because dehydration can be a killer in any situation, not just mine. I've been particularly attentive to the needs of my pets as well as they also don't like it when it's too hot.

My pets are well cared for and I take special care to make sure that they are comfortable and their welfare is objective number 1. When one of my guinea pigs had a poorly ear, I spent time making sure that his ear was cleaned daily, drops given to help with the wax and medication given to ensure that my boy was in as little pain as possible. He is doing so much better today and is more like the Tenzou we know and love. He's putting some weight back on and seems a lot better than he was at the start of the week. I really thought that we were going to lose him. Seeing him get better has been so worth it, I have had Tenzou for a long time and he is the sweetest little thing really. He always has time for a cuddle and he thanked my TLC earlier with kisses and as I was giving him his pain meds, he took the syringe off me!! Cheeky little lad! He is a cheeky boy. But he's MY cheeky boy and when he needed me to take care of him, I did. Even though I've been sick myself but that's the thing with me and animals. I have always had this love of animals and compassion for them. I will syringe-feed an animal every hour until he eats himself or sit there patiently with them. Seeing a good outcome is worth it, even if there haven't always been such good endings to the story. As I look around my living room, I smile as I watch all my animals being happy and comfortable.

I'm still working on a few things and will be chasing up leads for the family tree (so far I have managed to get some stuff done) and other things. What can I say? I like keeping myself busy and doing something a bit more productive than sitting around playing games (I do game but I do do other things too) and relying on others to do everything for me. I'm not really a lazy person when it comes down to it.

Wendy xx


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