Fatigue

I was in two minds as to whether I will post this or put my blog on private for the time being as I did not expect to be away for 6 months.

I often encounter the feeling that my mind is too full and I need to empty it out to find out what I want to concentrate on. So where do I start…

Things haven’t changed a great deal since I last blogged. I am feeling a great deal of anxiety about the future. In recent times I’ve found myself putting a positive spin on things, like for example: yes my mum is in a nursing home but she’s coming home soon. Well I don’t know that anymore. I want someone to tell me everything will be OK, that there is a way out, a light at the end of it all.

I’m finally starting UVB light therapy for my eczema on 16th June for approximately 3 months. Mixed feelings about this. I’m really struggling with the sense of crippling embarrassment over my health i.e. asthma, eczema, allergies the whole lot right now. I just want the ground to swallow me up. I don’t know where these feelings have come from but I feel an overwhelming sense to deny how I feel physically and by extension mentally. I’m feeling a lot of fatigue when I have contact with medical professionals (GPs, consultants, nurses etc) about these conditions. And this is being made worse by the fact there’s another specialist to add to the mix to my recently diagnosed eye condition – Keratoconus, I am actually gutted I have this.

Mentally I don’t think I am doing so well at the moment. I was doing alright relatively speaking but despite being invited to various activities with friends I have declined to go or if I have; felt a great deal of stress about it. All I want to do at the moment is stay in bed but the world doesn’t stop when you’re in bed so I have to push myself through the day. I love my friends very much but it’s just bad timing right now for me mentally to socialise. When I refer to mentally not being so well what I mean specifically although ironically is a feeling of vague apathy and hopelessness. Just don’t have faith that I can complete simple tasks like paying a bill without messing it up. I think I have lost a lot of confidence over the past few years and I didn’t exactly have a great abundance of confidence before then anyway. I think university will be make or break, and I am terrified that it might break me.

Is happiness possible?

This is something that has been playing on my mind recently.

It is quite a crude, simplistic way to put it. Being happy can mean a lot of different things from being content to being deliriously happy as if on a high. There aren’t any happy endings in real life, otherwise we would not know what being happy is; it would just be normality.

Is it self sabotage to say that if certain things were to happen then you would be happy, satisfied? What I mean is, if you decide that something relatively small would make you happy then that is easy but it is all relative. We all say we would love to win the lottery for example, but we generally know that is unlikely to ever happen so it would be foolish to say we need that to be happy. I can only assume that someone living in poverty for example would be happy to have food to eat and a roof over their head. So is it asking too much to want certain things? I’m not asking to win the lottery or whatever. I crave normality but there is a reminder every single day that I don’t have this. Life never seems to go smoothly, everyday I find myself bargaining with someone I can’t see to make the day go smoothly and blame myself if it doesn’t even if is the most mundane of things. If I said to myself that what I have now is all I need to be happy would that mean I would be happy? Probably not. I’m trying to accept “less” or shall we say settle for less than what I wanted but it just becomes harder and harder. I accepted that my mum was mentally ill, I then accepted that she was physically ill and now do I give up on that and let someone else take over even though I want her home more than anything? It is selfish because I want her home so things can go back to normal.

I’m not going to put down everything that I think would make me happy because that is I think a very private thing. Given all the recent disappointments I’ve experienced I’ve found that perhaps it’s better to act as if I don’t care, therefore if something doesn’t work out then people don’t need to know that I am disappointed, heartbroken even. I’m sick of sugarcoating things for others, it is exhausting.

I shared on one of my recent blog posts that I have a place at university. I have no expectations that it will work out sadly. I don’t know why I am trying. If I try to act excited, it feels and comes across artificial. I’m scared to try it because I’m scared of literally failing. And it is even more scary knowing that everyone knows and it feels like people are watching. I tell people that I have a place at university and I deliver this piece of news with a grimace, cringing at my audacity for even trying. And silently kicking myself for telling anyone.

I’m finding life quite scary right now because I honestly don’t think in 10 years time that I will be in a happier place in life. It cut deep recently when a friend told me to get a grip, stop self pitying and get on with my life, I don’t know how to process it any further than that at the moment.

My view on things is that all feelings are valid however wrong, incorrect someone thinks they are. It is ok for me to feel crap about what is going on because quite frankly things are crap right now. There is the phrase or a variation of “walk a mile in someone else’s shoes, as you never truly know someone until you have walked in their shoes.” I can try to expect less and less from life and therefore “stop pitying myself” but that doesn’t change the fact that looking at it objectively things aren’t great and that you would not want my life to be quite honest.

December update

I think the last time I blogged I was feeling a bit confused about various things. Also it feels really weird to be typing a blog on a computer so this blog post will probably be laden with typos and grammatical errors!

I suppose health would be a good place to start. I have had another admission for asthma since I last posted but that doesn’t really count as I had laryngitis and a cold so couldn’t argue about going in! I had allergy clinic again and that was interesting albeit disheartening to find out I’ve got another set of allergies to add to my list, including a serious allergy to Shellfish which seems silly for me to be too concerned about as I’m vegetarian but can’t help feeling extra cautious now. I am still deciding on whether to go ahead with Ciclosporin, although my current view is a no to it.

I have, however decided to go ahead with the U.V Light Therapy for my eczema, which I am hoping to start next month. It has taken me a long time to finally decide it is what I want and I have sort of felt a pressure to accept either this treatment or Ciclosporin. I have gone with the former purely because it seems the less scary of the two options I’ve been offered.

As for the situation with my mum, things are pretty much the same. She has spent the last 3 weeks in hospital with Pneumonia and Sepsis which has inevitably put on hold any plans with moving forward. I really hope she will be allowed to come home for Christmas then we can look at getting her home properly in the New Year. I do miss her terribly.

I am struggling with Christmas this year. I do not feel excited or happy about it. It represents a time when this time last year our lives were turned upside down. I haven’t bought any Christmas presents or written my cards because I just feel really down about it. It is a bit difficult when everyone else is looking forward to it and you’re expected to act the same. However Christmas now represents a time of loneliness, uncertainty and fear. I am obviously not Christian, but it used to hold a far happier meaning. I hope that one day it will again.

Since I last posted; a friend of mine, Dawn passed away. Dawn was a lovely person who suffered from severe asthma, I find it upsetting that she never managed to get control over it and that it took her. I cannot get across enough what a sweet caring person she was, I will always remember her. It was such a shock as I never really think about dying and asthma even though I am well aware that it happens, it’s always been about getting through it so as to getting better.

I am not sure if I will be continuing to blog regularly, I will continue to blog but it may well become that I just don’t post as often anymore. It is hard seeing some of the things I have written on here in the past and it is weird seeing it again. Of course this is why I blog, to keep as journal and return to it at another time to see how I feel about it then. But lately there doesn’t feel there is a great deal of progress or change. Stagnant is the word. I honestly thought I would feel better than I did 2 years ago. I did find blogging therapeutic (for want of a better word) but now it can sometimes feel like a chore and I associate feelings of fatigue with blogging. This is why I think for the next couple of months I may not blog unless I really feel the urge to. However, saying that I have a draft of a post concerning a subject that is something I am quite passionate about and that is transition- relating to continuing care of chronic illness from paediatric medicine to adult medicine, I remember discussing this at length with my good friend Kerri last month and today it was mentioned at clinic which reminded me of my blog about it. So I guess this is something to work on even if I’m not updating as such for a little while!

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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Changes

I last posted to say we were waiting on a decision for funding my mum’s rehab place. The funding was approved and she moved in 18th June. She has been there for nearly 3 weeks and I am going to a review meeting at 4 weeks to discuss whether she can come home after the 6 weeks or extending it possibly up to 12 weeks or alternatively whether she can no longer live ‘safely’ (for want of a better word) at home so if she needs to move into a nursing home closer to home on a long term basis.

The first 3/4 days were a nightmarish, she reacted in such a terrible way to the changes. What I mean by this is: being told to not spend her whole time in bed and thus preventing her from doing this, eating properly etc. I haven’t gone into detail about how hard she had been to manage at home in 3/4 weeks before she went for rehab. She was making herself sick, refusing to eat and became dehydrated which lead to a short hospital stay during May to correct the dehydration. Her behaviour at home was quite difficult to challenge, I usually nip her tantrums in the bud and give in but at rehab they haven’t done that hence why she reacted badly to it. She was throwing herself on the floor and kept banging her head on the wall deliberately as well as screaming a lot. As well as refusing to eat resulting in numerous hypos. The staff said she was probably just reacting to the change in environment and hopefully it was just a stage. Strangely, on the 4th day she was acting normally again and the tantrums had diminished. She has been doing reasonably well in that she is getting up, washed, dressed and mobilising but could be doing a lot more. She is mobilising with the frame but only when prompted and would still prefer to stay in bed! Her diabetes is actually a lot better reducing her Novorapid insulin from 12/16/18 units a day to 6/6/6 units a day and reducing her Levemir insulin from 34 units down to 6 units. She is eating more regular meals and mobilising more which means she needs less insulin, they think they might be able to get her off the Novorapid which would be brilliant. Initially 6 weeks felt like a long time but I’m uneasy that it may not be long enough, I’m not sure she will be in a position to go home in 3/4 weeks time.

Before my mum went over for rehab, I was feeling really stressed and stuck in the situation. During this time I decided I definitely did want to go to university as I didn’t want to end up stuck. I haven’t made concrete decisions but I will soon. I want to do something normal, something someone the same age as me would be doing. It isn’t really a life to spend your whole time as a carer and it doesn’t help my mum to reinforce the view in a sense that she needs such care, I want her to regain as much independence as possible. The first thing the people at the nursing home (where she’s having the rehab) said to me was: “How on earth did you cope?” And I don’t know really other than I suppose the motivation that she’d be going to rehab. They said she can do far more for herself than she realises but needs encouraging in a supportive but firm environment and that basically, I do too much for her. I have found she sometimes ‘plays up’ when I visit and I sometimes without thinking, go to assist her with standing up for example, then realising she can do this for herself.

I am considering going back to college to volunteer for a few months/full academic year as a student mentor for the students doing A-Levels as the careers advisor thought I’d be good at this. Not sure if I would but it would be nice to do something different. I’ve been considering my time at college and I think it has actually been the only educational establishment bar nursery where I was continually supported, encouraged and faced no adversity. My experiences in primary and secondary schooling were mixed to negative, I told someone the above at college and said I had come to college expecting to be bullied and thrown in at the deep end (and they were horrified). It is nice to be able to say such positive things about something even though I did have a tough time personally both with my mum and with health issues that interfered at times. I am concerned about going to university but I’m hoping that if I need similar support there that I will be able to access it.

This week somebody said to me that they thought I had a lot of tenacity, for some reason I view this as a negative comment even though I don’t think it was meant negatively. The comment was referring to my education, mum and health. The way they said it was as if they were fatigued in saying it. It makes me think I try too hard and that it shouldn’t be so hard if it worth doing. I know reading some of my comments in this post this is a contradictory statement but our thoughts aren’t all in the same direction, particularly mine! I don’t think the determination I had/have is a real thing but something that I view more out of necessity. Determination I feel, is the drive to do something because you want to do it not because you are forced to do it. Giving up for real doesn’t feel like an option. Giving up feels like a luxury – however twisted that sounds.

And so re-reading what I’ve written so far kind of sums up my thinking patterns: thinks rationally-gains confidence in decision- then down like a lead balloon doubting it all. Maybe some things never change!

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six months

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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