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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

I'll flap my broken wings and erase it all someday... You'll see.

Monday, 11 August 2014

Reasoning

Its been a bit of a tough weekend for me, my chest has been playing up because of whatever it is that's left it so upset. I'm starting to think that it needs no "reason" to do the things it does but having the confidence to do what I need to (when I need to) is important too, I haven't had to call it yet but earlier, it really started getting close and I was starting to worry. It's not that I have anything personal against it, I just don't always feel confident in the local hospital. After some of the things I have experienced though, who could blame me really?

As I say, the whole place isn't categorically bad as such but as usual one bad apple can taint the rest in the same way that one or two doctors or nurses who aren't, lets say, that good with asthma can make you feel afraid of the whole lot. There were other things that made me fear medical help but I try and forget that because it was one person trying to assert their dominance over me to cover up the lack of control they had in their own life and to be honest, they don't make the slightest difference to me or my life now. I find that it can be frustrating when doctors don't listen to what you're saying or take notice of the symptoms in front of them. It doesn't happen all the time, but when it does, it can make you feel like a right old fraud and want to walk out. Asthma isn't easy to understand for us who have to live with it, let alone someone who has only really seen it from an outsider's point of view.

The worst treatment experiences I have ever had at the Alexandra Hospital have been on the Medical Assessment Unit, Female ward (MAU F for short). Usually this has been down to the nurses who only care about one or two measurements and don't look at patients as a whole. I had one occasion where I had been feeling unwell and had woken up gripping my side as it was painful only to be told "Just go to sleep." (gee, if it were that easy I wouldn't have woken up in so much pain now would I?!) and there was another occasion where the nurse didn't feel like getting me my night time medication because it was 4 in the morning and she felt that A+E should have done it! I then had to explain to the staff why I was still awake and why I was in pain, the nurse was told that she was wrong but that's not the point is it? Not to mention that traumatic incident last year when I had been left in pain for 12 hours because a nurse practitioner was refusing to do her job and kept crossing off what the doctor prescribed.

The point is, when a patient needs caring for, the nursing staff should do as the doctors say. Another one was when I was prescribed back to back nebulisers (which basically is non stop nebulisers which take about 10 mins each) and after only having 1 in the space of an hour when I should have had more, I spoke to another doctor and asked if I could just use the solution I had in my bag instead! They agreed and said that really they should have been done by the nurses (who were sitting around the nurses station watching YouTube videos) and that I shouldn't have had to do it all for myself. I did put complaints in and they were told off for what they were doing but it does leave a mark on you and it does make you not feel like you can trust the people who you're supposed to trust with your life. I can't fault the staff in A+E, they do a great job despite being overworked and underpaid and the staff on other wards tend to be lovely and helpful but you do still come across the one or two who don't seem all that fussed with patient care.

Last time I was in, I was admitted directly from clinic by my consultant and the next day I was moved off MAU F to another ward (thank goodness) and this admission seemed to have a more positive outcome. Something had to change and I am glad that it did. Admittedly, I wouldn't go as far as to say that I like having oxygen at home, but I like the fact that it has allowed me to do things that before, I never thought I could again. I can go out and do things, enjoy shopping with my friends and even go out and socialise with people again. I feel like I can live what I would call a normal life. One where I'm not struggling to breathe constantly. One where I could walk up to the shop and back without my oxygen on.

We are talking about reasonable goals. Realistic things to aim for. I don't know what is possible and what isn't yet because, well I haven't tried and can't say for sure. Maybe one day I will be able to walk to the corner shop and back without having to rely on my oxygen tank. Maybe one day, I will be able to go in to town without my wheelchair and be able to walk around, even if I have to use a crutch or a stick to do so. I want to make sure that I am as healthy as possible because I have read countless stories about people who get sick and die young, leaving their loved ones in a state of sadness and loss. I never want to do that to the people I care most about. The thought of dying young and leaving the people I love to feel sad makes me feel so unhappy and I realise how selfish giving up really is. When you give up trying to make your life better, you give up on the people who you care about and love the most. In the same way that self harm was a selfish act. I know I won't be running marathons or walking all the way in to town and back. But if I could be able to manage short distances then that would feel like an achievement to me.

The important thing is not getting too disheartened if it doesn't go the way we want. Even if I only see a little improvement in myself in any of this, then at least I'm still trying instead of resigning myself to being stuck in a wheelchair for the rest of my life. If I can, I will get myself back on track and I have the inner strength to stick with it and family and friends to keep me motivated when things get rough, on top of that, I have a boyfriend who makes me feel like anything is possible when I think of him. Having the support of the people close to me is really a reason to keep going and as they haven't given up on me, nor should I because to be honest, giving up and letting yourself be miserable and not changing anything is worse than not doing it because people said you can't. It's all about being honest with yourself and getting to know your condition better than anyone else.

It is better sometimes to think of things in terms of what you CAN do rather than what you can't. For example, I can sit and use my Powerball for about 10 minutes at around 7000rpm. Maybe I can aim for 15 minutes at 7000rpm or 10 minutes at 10,000rpm? I have noticed that I have been able to hold things easier in my right arm, last night I was able to get a mug off the side (something that usually results in shaking and a mess all over the bed and floor) and not spill a drop! That is quite the accomplishment for me. I know it doesn't sound like a lot to anyone else, but the weakness in my arms was becoming something of an issue. When you don't move around too much over time, your body becomes atrophied and weak, as a result, small things become harder to do. It's instinctive that as you find yourself getting breathless and worn out in doing things to stop doing them completely. We all do it. I am trying to counter that because, well, I hate inactivity and want to be able to do things for myself again. Amongst other things.

Sometimes the things we want are the things we need to work for. I lost the weight that I put on through pred and olanzapine and now I really want to tone myself back up. I have been wearing more feminine clothes recently and it has been such a boost to my self esteem. Look in the mirror every day and find at least 1 thing you can like and focus on it. To me that is my hair or my eyes. My skin is glowing (thanks to me drinking more water) and my hair is growing because it's being well cared for. I take pride in how I look and when I go out, that self pride and confidence really shows. After all, if I can't respect myself, how can I expect someone else to?

If you walk around town, unwashed and uncaring of your appearance then you deserve to have people shout horrible things at you, I'm not saying that everyone should be vain, but I think people should make sure they look at least halfway decent before going out, and washing is just part of this whole "personal hygiene" deal. Personal hygiene is important to me anyway. I can't be around someone if they stink and don't take care of themselves. It shows little pride and care in yourself to at least make sure you're in clean clothes, have washed and aren't crawling with who knows what. It's coming up to that time of year when the kids are crawling with lice and as they're going back to school soon which means that lice are going to be everywhere so we'll need to take more care to avoid it.

Loves
Wendy xx

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