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, 29 November 2014

Love Keeps Us Alive.

It's getting colder as the months move forward. It doesn't feel like 2014 has passed so quickly, but then again, I have been so unwell for most of it that I barely even knew what was happening. I've spent much time this year on the wards of the local hospital and unfortunately things are still very much ingrained in to my body. I have severe asthma and I get a lot of infections. It's kind of sucky but at the end of it all, I am still here. I am still going. and I refuse to let anything beat me.

I had my care assessed fully last month. This basically meant that a social worker came out to me in my home to see where and how I was living, identifying what makes my life harder than it needs to be and deciding on the level of assistance I need. This means that they can allocate the right care for me at the right time. I am aware that I am very young and it is quite rare for someone of my age to be needing any level of help with my personal care but unfortunately that is the way things are. There isn't any other reason. I have been allocated 4 calls a day (each one lasting around 30 minutes) where I will be offered food/drink of I want them, medication is sorted and I'm helped to make myself comfortable.

My biggest problem right now is the fact that no matter what I do, I can't shift this infection I have had for months now. Both lungs seem to be down with it but the right one, as usual, has taken the worst of it. It's not particularly fun to get so out of breath from simply walking from my bed to my wheelchair or back again and it does drag me down emotionally. I would love to go back to when I was younger and these things were easier. I would love to not have to carry a tank around with me whenever I go anywhere and plan exactly how long I can be out. One of my cylinders allows me 15 or so hours of oxygen but obviously that can vary. It can sometimes feel restrictive and I feel like I'm on a leash. I know I am lucky that I am still alive (after the last 5 years, there have been times where I nearly succumbed to my illness) and I still have fight in me. I don't ever think I could really give up, not after I've fought so hard to stay alive. I don't think it's my "time" yet.

My aim now is to make the best of what I have now. It may not be what I wanted out of life at my age but it could have been so much worse. I just wish that people who screwed up, particularly the doctors who failed to listen when I kept saying something wasn't right. The nurses who didn't do their job because they couldn't be bothered and wanted to sit around nattering about the latest soap operas, I don't doubt for a moment that they are overworked and underpaid, especially on some wards where they are more like nursing homes than hospital wards. We do have an ageing population, we also have few spaces in proper homes for the elderly who end up in hospital due to the families struggling to cope. Then there's the ones who deliberately make themselves worse so that they can stay longer and get waited on hand and foot by the hospital staff. A lot of them often get their bells taken off them because they are so demanding so they end up demanding of other patients with no regard to why they're there. I don't debate that there are older people who are genuinely ill, but it's worse at this kind of year. "Granny dumping" is something that affects everyone.

Then you have the Social workers who are stretched to their limits. People only see the children's social work team and no one really knows about the adult community teams. I didn't seem keen on my social worker at first but we spent some time chatting casually. She told me how she has to explain to families that as their relatives aren't in their remit (and that is usually a very difficult remit) or that really no one gets care because they simply "want" it. I was lucky in a way to be in the remit to qualify for home care and I am really thankful for it. Since getting the carers I haven't struggled anywhere near as much. I don't go without a meal because I can't get to the kitchen. I am helped to wash, dress and I do have the best quality of life that is possible.

Saying that, since being on oxygen, I have been better. I still suffer daily attacks and can't really do too much, but I am living my life and I am making the best of it all. I want to find out what exactly is going on inside my lungs. Why is this infection not going away? I have implemented some lifestyle changes and they have helped me to be more comfortable and to me, that is the main thing. Since moving the guinea pigs and 2 of the rabbits in to the bedroom with me, I have been happier because I can play with them as much as they want (and they really do respond to "mummy time") and give them the attention they deserve. The boys particularly seem to be happier to be where they are getting plenty of love.

My boys. Nothing can ever describe how much I love them. I love all my pets and always have. But those snuggly, chunky, loveable pigs are my babies. I have always liked guinea pigs. Ever since I was a kid and we had guinea pigs in our rooms (Sniffy and Sparky). I was devastated when Sniffs died and I promised myself that when I grew up, I was going to have guinea pigs. When I got Patch back at Room 7, I remember the instant bond we had and I remember how we used to snuggle up (he used to sleep on the other side of my bed sometimes) and how he would wheek when I came back from college. I would unlock the main entrance to the house and I would hear him start to squeak, by the time I was up the 2 sets of stairs on my landing, that wheeking would get louder and louder and he would greet me. Every day I spent with that pig taught me something new. I never knew that a small animal could trust and love a human like that. It hit me hard when I found he'd passed away but every pig I have had over the years has been shown the same love and they have given me the same love in return.

My success story, Kadaj (named after the remnant leader in Final Fantasy VII: Advent Children) was such a unique creature. He came from a cruelty case where the previous "owner" (and I use that term loosely) had been trying to feed him to a snake. The poor little guy had wounds, broken ribs and major trust issues. It took me a while, but with time and patience, I won him over, both Becky and I did. He was so soft and soppy that he used to let us hold him like a baby and we managed to train him to jump back in to his own cage. When I feel low, I think of how proud of him I was and I see him, and all my past pigs, in my boys now, although I have yet to meet one exactly like him (although Tiggy seems pretty close).

My pets are one of the lights that show me to be brave. My pets, my friends, my boyfriend and my family. Whenever I feel like I can't do it anymore, whenever I feel weak or scared, I just think of them and it keeps me going. It's corny but it's true, love keeps us alive. And that is exactly where I am going to stay.

Wendy xx

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