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.

Tuesday, 31 October 2017

Starting CPAP

I've started on my CPAP therapy and am finding it a little bit difficult to get my head around it. So far it's been a few days but I'm not really feeling better as yet. I'm trying hard to just be patient and even if it's making me cough, I'm trying to keep that mask on. Like my oxygen. Like my nebs and wheelchair. It's hard not to feel like this new thing is like a life sentence. I hate that I rely on things to keep myself going and in myself, I'm finding it hard to accept it. Maybe it's because I didn't expect to be coming in to my 30s with everything that's happened to me but in a way, I hoped that I wouldn't need so much help.

For anyone who doesn't know what CPAP is, it's short for "Constant Positive Airway Pressure" and it basically pushes air in to your lungs to act like a splint to make them stay open. If you have sleep apnea, basically your muscles in your neck relax and go floppy, causing them to close up and basically makes you stop breathing. Obviously this puts immense pressure on your heart and lungs, which for someone whose lungs are not as good as they should be is particularly dangerous. It pushes up your blood pressure too as well as interferes with sleeping. To have the CPAP on is very unusual. Imagine you're standing in the middle of a gale and the wind just takes your breath. It's like that really, I'm sure that it will get easier but that's the way it is for now.

It does seem a bit bittersweet that I'm reaching an age that doctors thought I wouldn't ever reach. Maybe it's because I see people I went to school with as they have wonderful lives, children and are in their prime, don't get me wrong it is wonderful to share in those wonderful things and see them so happy but it is a reminder that there's a lot I won't get to do. Personally I am OK with not having children (I was told when I was 17 that I wouldn't have one due to problems with my uterus and ovaries) and maybe my pets do fill the gap. I'm not OK with having enough equipment for a hospital ward in my house! But I can't change that, I can't just not have it otherwise I'll just get worse and it could even be deadly in some respects.

Something that did annoy me about all this was that I had been saying for nearly 5 years that my breathing and my sleep were problematic but it wasn't until January when I had a particularly confusing appointment with the oxygen nurse that I finally managed to pursuade her to do a sleep study to prove what I was saying (because she wasn't listening to what we were saying and she kept saying that because everyone does naturally desat at night and she had asthma too so it couldn't be a problem, right?). I think she thought it would prove her point and when it didn't she then changed her tone completely! What worries me is how many other things are being ignored or going unchecked? What would have happened if we hadn't stood our ground and got the test done? Luckily now it's the Respiratory Nurses at the hospital who manage my oxygen for me and they're doing a great job! They were concerned that my sats did drop to as low as 70% (without oxygen) and I was stopping breathing 27 times in an hour (which makes my OSA "moderate"). The one thing they really wanted me to understand was that it isn't being caused by weight (pred made me pile on the pounds), more because of the anatomy around my neck.

The first night of CPAP was weird. I managed to tolerate it for 4 hours and then had to get the thing off, neb (as I'd been wheezing) and at some stage I'd put it back on. I felt like I'd slept for once but I didn't feel the immediate energy boost others had. The second night was awful. Last night was a little better but it was difficult to get settled for a while, not to mention the cough and pain in my sides (pleuritic like pain again, not pleasant). I'm keeping a short diary on things so that on Saturday, I can be as honest as possible. They said there's other things we can try, dental appliances and some surgery, but obviously this is the gold standard of treatment for OSA and as my lungs are struggling due to the whole effects of brittle asthma, it's a very complicated situation, I seem good at baffling medical professionals. I've been confusing the staff at the Alex for nearly 10 years now!

I'll keep trying to get as much sorted as possible, but it's not a simple "take this, feel 100% cured" kind of thing. I think that deep down I always knew that, even if my instincts tell me to fight tooth and nail against it. What more can you do? OK so it was hard to get this taken seriously, I had to fight but in a way it's good that I did. Something wasn't right and it couldn't stay as it was.

Wendy xx

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