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.

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


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