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, 30 October 2014

A Positive Thing

I was wondering recently, someone asked me what at typical day in the life of me consisted of and I never really got around to saying exactly what that was like. My days vary obviously from what my peak flow/ SPo2 and every other thing says so it can be a real mixture of things. I don't think there is what we would call a "typical" day with a variable condition. Today is one of my days where I have been trying to keep myself occupied as last night we had to get the emergency GP out (it was that or they would have had me taken in, which would have been needed had it not been for my o2 and nebulisers on hand) and I had a call off my GP this morning to discuss matters. The problem with my health is that it doesn't actually behave in a "typical" way. My case isn't textbook and it has more complications than most.

10:30 my day started as it does most days with my first carer. I have been getting regular carers and it is starting to form a pattern as to who I have. I get on with my carers and I like to feel like they have become a part of my life, not just "hired help". In the morning, we have to check my peak flow (either with a peak flow meter or my electronic Piko-1 device) as this can be an indicator as to how my asthma is. A "normal" measurement for me would be around 400l/min (optimum would be 440l/min respectively, but that would generally be if I wasn't asthmatic), this morning it was a little rubbish at 210l/min and my oxygen saturation (SPo2) was about 90-92% when I took my oxygen off (I have been sleeping with it recently as my chest has been absolute hell and well, I struggle like anything without it) and when I put it back on, we got up to 96-97% which would be considered "normal" for me. I stayed in my PJs today because I have been told to rest until I feel better.

The problem I have is that I find it hard to keep myself amused when I have to stay in one place. Because of my intelligence, I find I get bored really easily and when that happens, I tend to become destructive or depression kicks in. Luckily a new "Professor Layton" game arrived, I have all but one of the Layton series and I really do enjoy the test of them. Solving the mysteries and working my way through the puzzles is a great boredom breaker. When he teamed up with Phoenix Wright (another game series that I really like) and that can stop me from going mad and getting in a tizzy. I have also been playing other games on my DS and watching The Simpsons on my laptop.

I had a phone call from the doctor today too, just to talk about how things have been over the last few days. I was asked about last night and how I was feeling. We then discussed my "preventer" medication. I had been on the Symbicort 200/6 SMART dosing (2 puffs twice a day + 1 puff PRN) for years now. I used to have Seretide 500/50 but after a while found that didn't really do a lot for me and I was switched over to Symbicort back in 2010. It has helped me and I did find it more effective than Seretide so I was happy to take it. I am now on the 400/12 dose 2 puffs twice a day. It is early days yet so it is hard to say if it is working (I also have 40mg pred in my system as well which is probably sending me loopy too) but all I can do is be optimistic. I have to believe that it'll work. Every small win is a victory and any small improvement to my quality of life is worth a go. My quality of life isn't at the "Oh my god, woe is me, my life is awful" stage that so many others would be if they were in my position. I have to think pragmatically and I have to be objective about everything. Keep a positive outlook, even if there are days where I feel like I want to quit.

You have to be positive. You can't let these things get to you or they will destroy you. Even on days where I am thinking "Seriously?!" I try and make the best of it and look at things in a better way. I suppose that my condition has allowed me a certain freedom and I have the security to live comfortably and do everything I want/need to do. I have my home, I have my friends and family and I have the pets I adore as well. I can't help but feel like I am at least lucky in that way. I do wish I could go out and have a job, my social life as I used to and do other things but I can't focus on what I've lost. I have to keep looking forward and keep moving.

We are only defeated if we allow ourselves to be.

Wendy xx

Wednesday, 15 October 2014

Not Alone.

I am still here!! I just haven't had much of interest to blog about recently because really nothing new has been happening. I get these phases where it kind of plateaus and nothing remarkable happens. As frustrating as that can be sometimes. Since Wednesday, I have been having carers again. I had them before but they were stopped because the social couldn't get the funding for everyone. Now my needs have dramatically changed in less than 18 months, I am entitled to them again. I guess my health taking a nosedive has had it's advantages in a way. Like a lot of people, I was entitled to more help than I was getting at first.

So, since getting carers in, it's been nice. I have help to get up and out of nightwear, have a proper breakfast (not misc junk food or last night's left-overs) and I get ready to do whatever it is I have planned for the day. It does add structure to my days and that is ultimately good for me because it will help me settle down a bit more. It's good to see it in place before Natt moves out so that I can continue to live independently and he will still come over some days to check I'm doing OK. I think it's taking a lot of the pressure off his shoulders, it can be hard to care for someone, especially someone you're so close to. I know it has been hard on him to watch me get worse over the last 6 months and I often worry that he blames himself in some way. It wasn't his fault and I will keep telling him that.

It's been hard for me to get better recently because of my nightmare neighbour upstairs and his constant being a pain in the backside. I mean, who does DIY at 4 in the morning?! It's like he never sleeps either because he'll make noises at random throughout the day and night. Admittedly, I did find it funny when he tried to do something to the girls outside and he got a furious Riza attacking him. The squeal was worth it! I did then think "that'll teach him" and it did. He never came in to the garden again. Even though the girls are back inside (in the bedroom with me) for the winter now, as was always the intention, much to boy bunny's distraction because he can smell the females and he has this whole natural instinct to reproduce like all animals really. As lovely as kittens would be again, I don't think it would be in anyone's interests. It was wonderful though that 6 lives began right here in my flat and Riza was such a good mother and she did a great job in raising her little ones. I can't believe it's been a year and they have grown up so quick.

My animals mean as much to me as friends and family. Anyone who can say "it's ONLY an animal..." honestly has never been blessed with the utter pleasure of raising and being loved and trusted by a companion animal. There really is something magical about when you earn a pet's absolute trust and their undying love and affection. I have spent years living particularly with small animals, such as rats, guinea pigs, rabbits and all different kinds of hamsters. I don't ever regret it. In fact, my life has been richer in knowing the pets I loved (and they are never too far from my thoughts even when they're gone) and I believe that it has been my animals, as well as my friends and family, which have given me the strength and courage to keep fighting, even when things looked impossible or the pain was too much.

A lot of people say "oh but it's ONLY asthma" and tell me about how so-and-so has asthma and they are working and living a normal life so why can't I? I know when people say things like that, they're only trying to "help" and empower me somehow, but seriously, it really has the opposite effect. Telling someone about how their condition shouldn't affect them is a really horrid thing to do. Unless you can 100% know their life, what they have to deal with and how they cope, you honestly can't say what they should or shouldn't be able to do and frankly, I get tired of it because it makes me feel worse because I know I struggle. I know things can be tough and I know how and why. I'm the one who can't really do much. It's me who has to take as many as 50 pills a day and I am the one who deals with this as a constant throughout my life. I don't need reminding of it as if I don't already see it. I know my situation. I know what it feels like. I know what I can and can't do and I know my limitations and not to take foolish risks with that.

I have always believed that you can't judge someone until you walk a mile (or try to) in their shoes.

I have always been upfront about my physical and mental health because I truly believe that they are not things to be ashamed of. There are a lot of people who would try and almost blackmail me with my mental health but it never works because I don't have to be afraid of what my life can be. Just because I have these problems (bi-polar, OCD, BPD, schizophrenia, Aspergers (even if it's only borderline)), doesn't make me any less of a person. It doesn't make me "backward" or "wrong", it just means that I have to work harder to understand the world around me and I appreciate it more that way. I hate how there is this stigma with mental health problems and even though people are trying to break that, there will always be people out there to put you down and make you feel bad because of something and anything they can use and make nasty comments about shows how immature and backwards they really are.

I have a cousin, hes autistic as well and I am so proud of every milestone he makes. His mum and dad do everything they can so that he can be every bit as awesome as he is. I haven't seen him since he was 4, but I want to catch up with the whole family soon. I want Daniel to know he isn't always going to be alone and I want him to grow up without fear and with the support we never really knew that I needed until I was too old.

I have always tried to overcome the barriers that my health poses, even if it was a losing battle, what mattered most is that I at least tried to do it. There were things I never managed to finish (like my HND, I had to drop out towards the end because I was in hospital 3/4 days a week and exhausted and trying to recover the best I could at the time) but there are things that being supported has done for me. Getting the right equipment and support now has meant that I can do things I never even thought possible anymore. From going on trains to see people to actually going out and socialising with friends. Yes, it takes a lot of planning, preparation and I am absolutely shattered by the time it's over but I feel good. I feel happy.

I'll never know exactly "how long I have" but to be honest, I don't want to know. I want to carry on living my life the way I want to. I want to make sure that when my time does come, I can honestly look back at my life and say "Yeah... I did a pretty awesome job there."

Wendy xx


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