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, 23 April 2015

On Social Care

Woke up relatively early today. Well, it was early for me anyway. I have no idea, I just woke up feeling strange and then wound up getting up, doing some things and then curling back up after my carer had been. I can't even explain it but having the carers in has made my life better in ways I didn't even know of. I wake up and feel like my day isn't going to be full of struggle and pain and I can enjoy my days. Admittedly I don't do loads but honestly, there isn't really loads to do. In many ways though, I am thankful that I have the support and carers who work with me. I rely on my carers to make sure I have eaten, drunk and have had the appropriate meds (they prompt me to self medicate) along with providing my welfare, personal care (things like washing and dressing) as well as help to access the medical care needed. I have built good rapports with carers and there are a group of them that I really get along with. People don't realise how much a carer does for a person and how vital the work they do is.

Although it wasn't until recently that it dawned on me, there are so many younger people who aren't as lucky to have people fighting their corner. It is very hard for younger people with disabilities to get help with things like their personal care and are left to try and cope alone. It is difficult, but the truth of it is that "Adult Social Care" is predominantly accessed by the elderly and because they are living longer and wanting to retain their independence (and fair play to them), there just aren't resources for younger people. I remember talking to a social worker who assessed me recently and she even said "If you were 50 years older, we would be able to provide for you without problems. The trouble is that you are very young." Personally I don't think that being young should mean that you can cope.

I once said to someone, live a day in my shoes. See how I have to try and get around despite the fact that my lungs are failing and how I can't breathe properly (when I move, my SPo2 drops a lot and it often takes me a while to recover). I can't carry a cup of tea around (due to shakes because of my meds), often I drop it and burn myself. On my own, without the carers, I wouldn't cope.

But there are older people who aren't even provided for either. These poor people aren't helped by social services because they don't know what help is available or that the care homes are fit to bursting without more being supplied, some of them aren't helped and their families don't care for them either. The people who need care and because it would cost the families, they don't bother. Some families promise to take in an elderly relative and then don't bother because they find them difficult, a lot of older people with dementia can become frustrated easily and as a result they lash out (though there are some out there who use it as an excuse when an older person has lashed out, despite them knowing that what they were doing, the problem is that it should be established whether they know what they're doing is wrong) and care workers and hospital staff bear the brunt.
 I was reading about the abuse of staff in elderly care homes (because no one seems to see that it isn't just the residents who get abused because that is most commonly portrayed) and some of these people have been seriously injured.

On the other hand, I find how some people treat the elderly to be dire, when they become too much hassle and need too much help (to some people, any help is too much) they pack them up when they get sick and dump them in a hospital where they have to be admitted as they have nowhere else to go. This often means that they have to stay in hospital (among all the bugs and other things that aren't good for them) even when they are classed as "medically fit for discharge". These "bed blockers" are a huge strain on an already struggling NHS and it makes it harder for wards to care for patients, especially if patients are quite demanding anyway (often due to their condition, sadly dementia is a terrible thing and they often need to have someone sit with them or they wander and cause mischief) and there just isn't the staff to sit with them and it's sad. They have their dignity taken away and there is no way of stopping it.

I wonder, do people assume that someone who is young doesn't get sick? Unfortunately it has become an assumption that people who are younger will always be healthy. Do we just throw people away when they become too much? Why are medical wards (most commonly the respiratory wards) used as "dumping grounds" for people who no one seems that bothered about? I love my nan and I wouldn't ever think of just dumping her in a hospital because she needed some help. At the end of the day, they are still people. But there needs to be more provision for younger people in Social Care. Personally, I believe that Adult Social Care should be split up a bit (but won't due to funding cuts and Local Authorities' hands being tied) and 21-70 year olds should be dealt with differently to 70+ (70+ should have more specialism towards dementia and elderly care where as 21-70 year olds would be more focused around allowing the service users to do more of what they want to and what they feel is "normal"), but as I say, due to constraints, this isn't possible and it is a shame.

Maybe its something that once the new government is in, they will address?

Wendy xx

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