Mixed feelings

2013 is turning out to be one of the most confusing, uncertain, upsetting years of my life. It’s nearly September and I wonder just what is going to happen in those final 3 months of the year. I will be glad to go into 2014.

A lot has happened this month and at the end of each week when I have pondered blogging about what was happening thus far emotions have ranged from excitement, fear, feeling fragile, happy, sad and so on. As per usual I’m not sure where to start.

My mum has gone from doing really well and making progress to all of a sudden having a bit of a blip. She has been throwing herself on the floor again for reasons unknown other than feeling that someone/something is causing her to fall. As a result she has extensive bruising all over her feet and a sprain which has further hindered her progress with mobilising. The plan had been for her to go home in the next month or so but this clearly is not going to happen right now. I think there will be another review now to see where things stand as essentially her ‘discharge’ is now delayed.

The next thing is a real mixture of negative feelings. I have recently been in hospital with asthma and was briefly in ITU. I’m not sure I can go into this all in depth as things went crazy (for want of a better word) and if you are reading this and know me in a personal capacity you probably already know what happened but I can’t face discussing it all over again. I feel however much I am reassured about the whole thing I just can’t stop feeling crap about it. I feel incredibly guilty, fragile, confused and sad. However asthma-wise I am doing amazingly well since this admission.

I have a place at university for autumn 2014. I confirmed my place back in May/June (can’t quite remember) at the time I was still feeling pretty uncertain about what I was doing, I was feeling a huge amount of pressure to commit (and numerous people were asking me to). The scary thing is I’m still not sure if it is the right thing as I don’t feel academically able. It is a university that ranks well in league tables has an amazing reputation etc. and I can’t quite believe that I’m actually going there. I don’t feel I deserve to be there. I don’t feel clever enough to be going there. So I have gone from that; to feeling really excited after telling everyone and their excitement rubbing off on me, to the old anxiousness of feeling that I don’t deserve to be there as I think I’m not academically good enough to do the course.

Health wise I am again feeling a lot of fatigue over it. I am being urged again to try immunosuppressant agents by both my respiratory consultant and my dermatology consultant. I protested today that just because I’ve had the blood tests for it all today does not mean I am agreeing to any of it to be met by bemused looks from my consultant. At that moment in time I felt that I wasn’t going to get a choice in anything as they were like we want to do x,y,z and that was that. And lots of other things were said and I’m not sure how I feel and I feel like things are stagnant and have been for a while and probably will remain the same for the foreseeable future and its potentially my own fault as I’m basically too scared to try these things out. I’ve been to see the allergist too recently and it is all very interesting both from a personal view in how it relates to my health but also from an academic point of view as I find immunology really interesting. However I’m not sure if I’m going to achieve much difference in quality of life as the plan so far is to make a custom diet that is basically free of all things I’m allergic to which yes is great but I know how much I’m allergic to I wonder what I’m going to be left with. And then I’m thinking that if the diet helps it can only help so much as not all my allergies are food related and I just feel that there is too much going on to gain a real significant improvement from the allergy point of view on my overall health i.e. my asthma and eczema.

August has been fun too though! 🙂 I went to the engagement ceremony/party for one of my closest friends a few days after I came out of hospital and it was just what I needed as it was all so fun, happy and exciting. Much more so than I was expecting. I had slightly dreaded going despite being pleased to be going as I had to find an indian outfit for it and it just brought back the stressy feelings of shopping for my prom! I’ve also met up with lots of friends who were home from uni/off work for coffee etc which was so nice I think Starbucks/Caffe Nero/Costa should give me more reward points for the amount of time and money I’ve been spending in each!

Then last week I met up with Emma for her birthday and just spent the day doing things like going for lunch, cinema to see Planes (we were so not the target audience) and shopping. I haven’t seen Emma in ages and it was just so nice to spend the day with her catching up.

There’s so much more to say but I don’t know how to say it. I just want to stop feeling so scared about the future and start feeling excited about the future.

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I think too much.

I went to the review meeting about my mum’s rehab placement and the decision was to extend the funding up to 3 months to as to allow enough time to address all aspects of her well-being. My mum has recently managed to come off all insulin and is now tablet controlled, this is amazing as she was deemed to have ‘brittle diabetes’ as it has been woefully uncontrolled for a few years. She is also going to be reviewed by the psychiatrist with a view to change one of her medicines to one she previously took but had to stop it due to elevated Prolactin. I’m really concerned about this, given all of mum’s recent health issues I don’t think it is a good idea to be messing with drugs that have been known to cause issues in the past however good their intended effect is. Her current medication isn’t as good as the one they propose to put her on however its the one she’s been most stable on compared to the other alternatives. I’m concerned that as her recent blood tests have shown a few issues with her renal function and high potassium levels which we’re hoping is due to dehydration from the hot weather we’ve been having recently.

My mum is doing relatively well in the nursing home. I look at myself and feel ashamed that I couldn’t achieve these things for her. I couldn’t bring her diabetes under control, I couldn’t make her get dressed etc everyday, I couldn’t make her mobilise, make her eat properly and regularly. These are such simple things and I couldn’t do them. I didn’t have the ability to encourage her as I’m passive and not assertive. It is shameful that her diabetes has been brought under control so easily and I couldn’t manage it. I’m meant to be her carer but I was clearly doing a really poor job of it.

I’m missing my mum a lot, especially since the decision was made to extend the funding. I try to spend as much time out of the flat as I don’t like staying at home as she isn’t there. Although the plan is to discharge her home with a specialist care agency making visits at home, I’m mindful that this might not happen. As much as I really really do want my mum to come home, I have to accept what is best for her and its quite possible that remaining there might be the best thing for her. Its about her and not me.

I recently stopped having counselling. I think it came to a natural end; not because things have been resolved but because there really wasn’t anywhere to go, I’d basically go every week and have a chat with my counsellor about things as its long been accepted that actual counselling methods don’t seem to be that beneficial to me. The things that trouble me persist and they persist because they are either external to me or are too deep for anyone to have answers to. I’m very fixed on the concept of karma and cannot shake it off, it’s almost become like an OCD thing. I do certain things which aren’t even related to the concept of karma but feel if I do/don’t do something then it could lead to bad things happening. I find these thoughts/feelings quite intrusive. I’ve always had OCD-type tendencies; when I was little, in shops I would have the urge to straighten all the packets of chewing gum or paracetamol or whatever. Sometimes I am halfway from home and I will go back to check I’ve locked the doors which often makes me late. I feel I have to do things a certain number of times and I won’t ever do things 3 times or buy 3 things for example. I know rationally that this is silly but I can’t *not* do these things. These tendencies get worse during times of stress like when my mum was very ill in hospital.

I am, or at least- was religious. My family are Hindu and Sikh and I have been brought up to observe both due to my parents’ slightly differing religious views. Everything felt more ‘right’ when I was younger and I went to the temple regularly and prayed everyday. But then when you’re 5/6 life is very different, you’re (quite rightly) protected. In my 20s I’m in the big bad world and it makes me so cynical. So many bad things happened, not just to me but looking at the wider picture, in the world. I find it all so troubling, if God exists why doesn’t he listen? Why do bad things happen? Yesterday, I could have done things a million times different and still not so good things would have happened. I really do want to believe properly again. When I pray I can’t concentrate, I can’t block external thoughts out and focus. It doesn’t feel like I can pray properly because my mind is always so ‘active’. I’m not saying I am atheist, but perhaps I can no longer say I’m truly theist, perhaps I’m ‘mildly’ agnostic, if that’s the correct term.

I thought I was starting to put my life back together again. But I can’t seem to shake this overwhelming sense of loss. I feel I have lost the majority of this year and I don’t even feel as if I’m in 2013, I still think its 2012. My world appears to have stopped since my mum became so ill. It is August and it is now the final months of the year. 2013 could be the year that never was. I had made plans to move forward but I have fears and doubts, I don’t have the belief that my plans will come to fruition. I’m trying to pre-empt my disappointment. There is of course a good reason to take a plunge, to take a walk into the unknown. However I think my fear is much too great to overcome this.

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