It has now around six months since this whole thing with mum started. It has gone so quickly and up until the past couple of weeks I viewed this situation as a temporary blip. It isn’t temporary and it’s going to take a while before progress is hopefully made, this could mean it could be up to another six months before there is any resemblance to how things were before.
Except they won’t be the same because even if the physical side of things improves for mum, there is this thing with having had this experience quite separately. For example, there were weeks and weeks where mum and I couldn’t engage in any normal discussion because she was so poorly, out of it. While she was actually going through it physically, it is hard for her to relate to the amount of anguish and anxiety I went through watching it happen. She doesn’t know what it felt like watching her so agitated writhing around on her bed on the ward or during dialysis sessions, ‘awake’ yet unable to talk and no one understanding why. We talk about things now and she barely remembers anything except mainly post operation and a few weeks before it.
I’d quite like to forget or rather move on from it because I’ve thought about it a lot while going through it and since. Its hard to move on while the situation persists in that she needs physical rehabilitation. It is a cruel thing really, everything in hospital 2 months or so ago was just about her surviving the whole thing and now its another thing to contend as I pretty much thought once she was well she’d be more or less back to what she was.
I’m worrying about rehab because everything depends on funding. Mum was assessed for a specialist rehab centre around 30 miles from home who said she was suitable, but the funding panel meeting isn’t until 7th June. Two things, mainly what happens if they can’t fund her to go there? Community physiotherapy aren’t bothering to see mum. Secondly, the team who organised this requested 6 weeks as a starting point but can be long term. This feels like a lot, it basically feels like 2013 is going to be a year of mum being in and out of hospital/rehab facility.
Looking after mum is taking its toll, I’m very irritable at the moment. Mum’s CPN came out twice last week to see her because of an investigation going on as apparently somebody involved in my mum’s care who visited her at home stole money from my purse, the individual’s colleague is the one who is claiming to witness this. This person has been suspended from their role and an investigation is in progress. Mum already struggles with carers, district nurses etc coming into our home, this has been a breach of trust.
I’ve been to college recently to discuss university, I’m being pushed into going and I just feel like saying “wait, wait, wait I want to get off this ride” as its like they’re trying to make the decision for me. There is some pressure as the situation at college has become a bit ?uncertain (for want of a better word) as there have been a lot of issues including abysmal OFSTED reports and their recent decision to end provision of the A-Levels course. The latter is a potential issue as staff are leaving to teach elsewhere so if I reapplied I might have issues getting a reference after next year.
It is often a thing that if I’m pushed into something that I panic even if it something that I think I want or know could be/ is good for me. From a health point of view I’ve declined UV therapy and immunosuppressants when I’ve felt rushed-pushed into agreeing and university. It’s weird, I’ll be amenable to an idea then as soon as someone pushes me into it, it backfires. I do the opposite and back out.
It feels the above is a self destructive trait and its been discussed with me during counselling that perhaps I am a little bit self destructive. The way I visualise it is as if I’m drawing a picture and I make a little mistake I will scribble it all out and screw it up. From a physical point of view; I push and push myself out of stubbornness to not go to hospital for asthma, I don’t know if I view hospital as the hard option or the easy option just something that I don’t view as an option. And then educationally, I let things affect me because I think they will. I’m scared to go to university because I’m scared of what would happen. I’m scared to take the plunge. But that in itself is not good because then I’m not progressing.
I have to keep a food allergy diary at the moment because I’m currently seeing a specialist dietician from the Asthma and Allergy service. Except I’m struggling with this. I know what it is for, I know how it could help, they said they’re not the ‘food police’ and to just be completely honest. I have weird food habits, I never have breakfast unless it is put in front of me and there are others with me who are eating it, some days I won’t eat at all then the next day I will eat everything in sight. I don’t like eating on my own yet I don’t like eating with people I don’t know. Then there is the thing of: I already avoid a lot of things I have definite symptoms to so that might leave my diary a bit sparse? There has been discussion a fair few times that I might have a degree of malnutrition, I have severe Vitamin D deficiency for a start which they suspect may be responsible for a lot more than I realise yet I’m struggling to take my Vitamin D supplements because the first tablets were really too big and the powdered versions are making me wheezy but I’m too scared/embarrassed to go back to my GP to ask them to change them again.
It also feels I can’t ask for help with eczema, I’m depressed about picking up 30 boxes of Viscopaste every month along with 30 boxes of tubifast to go over it as well as carrying home my other usual medication. I can’t apply my Viscopaste properly but the dermatologist expects me to because a) I don’t want to come to hospital every day to have the bandages applied and b) my mum used to apply them for me but she can’t really help me with it. I’m just getting wound up with carrying all these bulky boxes home that I can’t use properly and in the meantime my eczema is same/worse. I’m tempted to just stop requesting the prescriptions because then they will see I’m not using it and will ask why.
I just have this overriding feeling of being arghhhhh really bothered- agitated, that is it in a nutshell, rather than around the 1000 words I’ve written!
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