Friday 13 November 2009

Posting just because i am bored...

Its been a bit of a boring day today, although i did have a lovely evening yesterday with my friend; eating tasty jacket potatoes, chatting and watching a film. Was so nice to get out of these four walls for a bit and do something that is not related to my M.E.! Doing things like that makes me feel a little bit like my old self for a while.

The rain is bucketing down outside the window, and i am hoping there is something good on the telly tonight. I have just put the phone down having chatted to my boyfriend, and he too is holed up in his flat with a gale blowing outside. He is hoping to drive over tomorrow if the weather improves. We might not manage our pub lunch tomorrow though. I was feeling delicate today and had heart palpitations rather often (every time i moved, almost!) so i didnt make the hospital visit to my Grandad and i dont want to leave it any longer before going to see him - so i shall go tomorrow.

I am dying for a cuppa...but before i go and make one i want to just talk about the possible significance of my recurring dream...

Well, i have read that Reverse Therapy, which is a successful remedy for some M.E. sufferers, is based around the idea of finding a 'message' that is trying to be relayed to the patient by their unconscious mind. The patient, according to the theory has so far failed to pick up on this message and so the body goes into a state of emergency or 'fight or flight' because it is basically in a bit of a panic that this improtant message has not been received nor acted upon. This, apparently, is the basis of symptoms for M.E. in some cases. (Apologies to readers who already know all his!). Anyway, since i have got ill i have had the same dream around 20 times - i looked into the significance of recurring dreams and they too are supposedly the subconscious mind's way of relaying a message. And so, i have been trying to decode mine!

My dream is thus: I am ice skating around the old local ice rink which was demolished some years ago and replaced by a new one. The dream is great fun nd very vivid - as though i am really skating! Sometimes i skate without any difficulty, but in some dreams i have been out of control and unable to stop, in others i have felt too heavy and weak to skate (as in real life!) and sometimes i have been almost tripped over items of baggage which have been left all around the periphery of the rink. In several of these dreams there has been some kind of emergency; including a fire, someone collapsing on the rink and a small boy skating into a glass barrier, smashing it and cutting himself.

The idea of losing something seems to figure in these dreams too - either i leave my coat behind, cant find my bag or have had my wallet stolen. I dont find these items before i wake up. Anotherr recurrent theme is to do with the seating in the ice stadium - i was made to move out of my seat, because i had supposedly taken someone else's seat. It was insisted by this person that i moved, even thought there were hundreds of other spare seats. In another dream, my seat had gone rotten and the timber was coming away in my hands.

And lasly, in every dream, i have some kind of scheme going to halt the demolition of the stadium. Either i have won the lottery, or come into some money somehow, which means i am going to buy the stadium and save it. I should point out that i spent much of my childhood in the old stadium and my first childhood dream was to be a skater - unfortunately i did not have the ability, by a long shot! As an adult i have returned to skating and absolutely loved it, and thankfully, i am better at it now than i was as a child. When i got ill of course, i had to give it up. I say all these things because i wonder if anyone out there has any ideas what this dream could mean. I have a few theories of my won, but i wont put them on here just yet, as i would like to hear other's views, if you can spare a minute. Many thanks!

Thursday 12 November 2009

A successful week - thankfully!

Its been quite a successful week in that it has been busier than ususal and i hve survived it, without feeling too bad. I baked some cupcakes for my Grandad, have attended the hospital and met with my nutritionist, and i have also managed to walk around a (very) small shop in the nearby village and pick up a few clothes bargains, which cannot fail to cheer me up! Plus had a pub lunch with my boyfriend on saturday. By my standards, i think i have done well to squeeze all of this in. I am still getting lifts everywhere of course and i dont walk any more than a few metres; my mum always parking right outside, but at least its a step up from completely crashing for the rest of the day follwing every small outing. There have been the usual ups and downs, but its generally been a good week.

I watched an incredibly inspiring documentary the other night - about Katie Piper, who survived an attack in which acid was thrown into her face. I have such admiration for the girl, her bravery and dignity. She is beautiful too. She said something that really struck a chord with me - about how she saw herself before the attack as a 'best friend she wouldnt see again' because her life has changed so much. Now im not claiming to know how she feels or to have gone through anything remotley as horrific as she has, not for one minute, but a part of me can really understand that feeling of having your life completely change - i thought her quote put things in a nutshell. This world is just so competitive; everyone is judged on their achievements and their occupation - but until something happens to interfere with our plans, we just dont realise how much we are at the mercy of Lady Luck, in making our aspirations come true. I wish those people who sat in judegment of others under these terms would appreciate that they are lucky to be ignorant of the fact that this is no way to measure a person.

I am of to my friend's house tonight for tea and a DVD. I am looking forward to seeing her. She has been a really good friend - better than most actually. Some have treated me as if i have died! She has been a true friend, rather than someone who sees that i am no longer good to accompany them for a night out, etc, and therfore, am no use anymore!

I have to be thankful for this good week and hope it continues. Later.

Sunday 1 November 2009

On feeling negative

I've felt 'down' today. I dont know why. I've calmed down a little now. But i've had one of those days, as i have once in a while, where i have felt like i just cant accept the position i am in. It started with looking at Facebook and comparing my life to that of others -always a mistake. Then it progressed to looking at forums where people were explaining how CFS had affected them. Not that there is anything wrog with these forums! They can be a good thing - and of course i am doing the smae thing -posting how i feel online. But i dont know if looking at them is always a good idea for me. I start thinking of how its affected my life and then i get into a negative train of thought and catastrophic thinking. Maybe i shouldnt be posting then; i dont want to make someone else feel negative. So i wont go into too much about how i felt. But these feelings come, but at least they go, rather than staying with me all the time. As long as i continue to get better, that's the main thing. I know it wont happen overnight, and this glorious day where suddenly i am the person i once was is not going to come as one particular day. But rather it will happen gradually - i hope!

There is nothing i would love more than to be able to do all the things i used to do. To be able to walk distances without thinking about them and worrying if i can make it! Without having to ration whati do and 'forward plan' and ration my activities, just to keep the tiredness under control. And to walk down the steet with confidence and feel like a young and (a little bit more) attractive person! And to have a successful career again. OK now ill stop, because i am starting to list the things that i cant do, instead of the things i can. Must get out of the negative spiral and not get caught up inside my own head. I never got round to my baking today. I will do it tomorrow; then i will have achieved something and i shall feel better. I think anything is an achievement, however small. Wherever our 'baseline' of activity is, its an achievement to stick to it or even rise above it by a miniscule amount! Just keep plodding. Or as Dory from Finding Nemo says: 'Just keep swimming!'

Saturday 31 October 2009

A lazy day

Well I've taken it extra easy today; in fact i've done nothing but mess around on the internet and rest on the sofa. I did put a little shoppin away in the cupboards, when it arrived via home delivery. And i did pop next door to return a couple of books. Our neighbours' daughter has Lupus and kindly lent them to me - like me she loves reading -so we are doing a bit of a book swap.

At the moment i am in bed watching Jo Brand Live at the Apollo (i do love her!) And it's Halloween too, and i am planning not to answer the door to any trick or treaters - i have no money to give them nor cakes -so ill pretend to be out! What a misery i am!

I have to say that the late evening is probably my favourite part of the day - because i can legitimately lie in bed comfy and cosy and watching whatever i like on tv, without feeling like i should be persuading myself to be doing something. As anyone with CFS will know, most of the time it just feels natural to lie down or at least sit down, all day every day. Well, i suppose thats not quite true. When i have a bit of energy i get really excited and get out of the damn house asap, or at least do something different!

But i love my room. I love sitting in bed with my lamp on in a dim light - think i shouldve been an owl, or as its Halloween, a bat! Actually i have always been a night owl, even before i got ill. I loved my evenings out and was always inclined to go to bed late. Late evening has always been my 'unwinding' time, which i suppose it is for most people. I have always hated early mornings.

I had to take it easy today - yesterday was a difficult one, energy wise. I went to visit my Grandad in hospital, bless him. I love my Grandad, i am so sad that he is so ill.

Well i can feel my eyes glazing over now so i will sign off. This weekend i am planning to bake again, so i can send him some home made cakes and biccies. So hoping for a good day tomorrow, after being a a little tired today. Goodnight!

Monday 26 October 2009

A nice change of scene...

Well here i am at my boyfriend's flat - decided to travel back with him after he came to visit me at the weekend. I love to come back here. I love spending time with him and having our own space. He is currently at work, so when i do docme back here i like to try and make myself useful around the place by doing some light housework. Of course, it is only 'light'! Usually its pot washing and if im up to it, a bit of ironing. I can only iron 2 shirts at a time though, then i have to sit down. The rest of the day i spend on the internet or relaxing watching TV. I am one of these people that can watch the smae DVD over and over - its embarrassing how many times i watch the same things! I suppose watching anything new spends too much energy, so i like to stick to my well loved comedies - Open All Hours, Benidorm, etc! But spending the day on my own theres noone to say: 'Surely you're not wtaching that again?!'

I go home Tuesday, unfortunately. My plans for the rest of the week are to ry and visit my Grandfther again and to bake some cookies for him. We'll see...

Friday 23 October 2009

Another attempt to fully update this blog...

I dont know what's worng with me... i used to love writing! But i cannot seem to get organised to post every day. Probably just as well, i would bore everyone! But i have just looked back and seen how woefully incomplete the blog is! Its time to correct this now...

So, i started in my last post to tell you about my beautiful dog and the fantastic effect she has had on my life. I think maybe she is the key to making me use a different part of my brain; the part that doesnt focus on symptoms and suffering. She gives me something to live for; which was desperately needed. Every day i have to make sure i feed her, let her out and if i feel good enough, take her for a 25 metre walk (and no further) up my road, for a sniff on the grass. Fortunately my family take her for proper walks. But all these little things have got me used to getting up out of my chair and having some tasks to aim for. And if i am just sitting here on the sofa, at least with the dog curled up on my lap, i am pleasing somebody!

I start my M.E. rehab on 24th November. This is an 8 week course run by my local hospital and includes such things as how to do pacing, coping with stress, pain, how to communicate with others to avoid being forced into doing things that are beyond our energy levels, etc. I already have the manual that accompanies the course, so i have most of the info already. I am excited and a little nervous about meeting other epople with M.E. So far i havent met any curent sufferers, even though i do know 3 people who have had it in the past. But current sufferers seem to have evaded me so far - in person i mean! Not sure how i will react. Will they be worsely affected than me? Will they be better? Will i be discouraged by those who have worse symptoms; thinking that i might end up the same way? Or will i feel worse if everyone else has more energy? Probably. But its worth a try.

At the moment i am doing some recommended stretchine exercises each day (although the past week i havent managed to do them, on top of everything else :( )

Another thing i am dreading is the 'payback' after the rehab sessions. They are 2 1/2 hours duration - how to concentrate for that long? Plus i have to be up early. So i dont know how ill be with that. Added to that my poor Grandfather lies ill in hospital with terminal cancer. I have to visit him as regularly as i am able, because i want to make the most of the time he is with us. I am worried that i wont be able to recover from my weekly rehab sessions in time to visit him each week also. But i have to; i cant waste the time we have. But it is going to be hard i think.

Sometimes i feel like i am immersed in the medical world, with illness all around me. It is rare i go out to do anything pleasurable. I miss countless things. I mss life as i knew it really. My life has changed beyond all recognition. I havent been shopping or out with friends properly for a year and a half. I havent been on a day out or had general freedom. Neother have a i been ice skating, which i loved, and of course, i dont work. So i miss lots of things. It's a strugle to carry on sometimes, when i look at life this way. I do try not to. And i have replaced a few of these things with other activities; i guess i have adapted. My latest attempts to occupy myself is through cooking and baking. My anti candida diet has meant i have had to prepare lots of meals from scratch - gone are the mocrowave dinners! So this has helped me to increase activity and pace myself automatically. Ive now started baking, so i can take little baked treats to my Grandad to cheer him up. It gives me a sense of purpose too.

A weird thing today - i have a rash appeared on my upper arm and waist - lota of tiny red, itchy spots! I am a little worred about it, but i will wait and see if it disappears...

Hoping for a better day today - yesterday was not good as i was recovering from the hospital visit. Why do car parks have to be so far away from the wards?? maybe ill do some baking today...

Friday 16 October 2009

A long overdue post

Well its been too long since i posted on my blog - i have let myself down again! Maybe i havent posted because i have been feeling more positive and less likely to ruminate. Thats what people tell me 'You never hear about recovery stories on the web because those who have recovered are out in the world.' Lets hope theres some hope then! Anyway, i have not recovered; not by a long shot, but, i have had some form of an absolution; in the form of my lovely new Cocker Spaniel, Dotty. She has clearly been the best medicine i have had so far. Along with Creatine and D Ribose powders (for muscle building)! She has, i think, helped me to relax and feel happier, which has facilitated some healing. Obviously there is still one hell of a long way to go - we know all to well that being happy isnt enough to get us out of the woods -but at least it helps. The recovery times after activity are getting a little shorter, thankfully, although my activity is still minimal compared to a 'normal' person. But small things to a non CFS-er are huge achievements for me.

I thought i would take this opportunity to share some of the things that have helped me:

Counselling - this helped me get my thoughts in order, and although emotionally exhausting at the time, relieved a lot of stress, which aids recovery.

Anti candida diet, along with anti fungals, probiotics and EPA fish oil, St John's Wort, and Co Enzyme Q10. I found a helpful nutritionist at my local herbalist store who actually helped me for free. Might be worth asking at your local herbalist!

After 4 months on the anti candida diet, i started taking D Ribose and Creatine powders and gradually introduce previously forbidden foods into my diet (still working on this)

Meditation CDs- great for relaxing and sending you to sleep.

Half hour rest periods, taken regularly, before i get tired, and following them with light activity, to get going again.

Leaving the TV switched off when not watching it - it was draining me of energy without me even realising!

Hope this helps somebody!

Saturday 22 August 2009

Well, its a lovely day outside today, and i had planned to go for a drive - however, i am feeling a little unsteady today so i probably wont end up going. I got up early this morning (well, 9am) to make breakfast for my boyfriend, who has since gone off to as stag do which involves a nigh on the lash, and a trip to Go Ape - a kind of assault course up in the trees! Rather him than me.

I suppose as noone who reads this blog will know any background info, i ought to give some - about how i came to have M.E. and what level i am at now. I am suspecting that noone will read it - i am sort of writing it that way; because if i thought anyone was, i would have been more positive! Anyway, my M.E. started in May 2008, when i got some strange virus that started off like flu. This progressed to muscle heaviness and weakness, some numbness, anxiety and of course extreme tiredness. I lost my strength really suddenly, and although the shakiness has improved considerably, it is still there and my muscles are completely soft, with no tone and i am tired all the time. I gave up work in September 2008; with my employer keeping my job open for 6 months wihout pay; which of course have long since expired.

I am now at the satge where i can only walk short distances. If i walk 40 metres i will feel exhausted, but not straightaway - about 2 hours later! I can do bit of housework - bits of cooking, small amounts of ironing etc with rests inbetween, but not a 'normal' amount by any means. On a good day i can drive a short distance. So, i am mostly housebound, unless someone can drive me and drop me right outside the destination.

The hardest thing has been accepting the imact this has had on my life. Before all this, i guess my life was 'to' perfect. I loved my jobas an instructional designer for a small company. I loved to skate and would go three times a week, plus an exercise class. I would go out with friends to pubs and bars, shopping on Saturdays. Now i have none of this. The most i do is have a friend over for a visit, or be driven to a friend's house. if i get out at usually it's for medical appointments. I find it difficult to stay positive in view of all that i have lost. Sometimes i feel like a ghost to my own life - especially when i get driven past places i used to go. I can see my shadowy figure walking on ahead of me. And i can't stop the thought: 'Why me?' which has to be the worst one of the many thoughts i have.

It is difficult to see someone else doing your job, see friends socialising. I keep in touch with people which provides a 'window' into my past life. It is really heartbreaking to look through.

Friday 21 August 2009

I received a lovely email yesterday which actually gave me the support i was looking for - everything about understanding how it must have felt, and i have to say i felt somewhat better for reading it. Im still going through a mix of emotions; on one hand i am looking at the letters M.E. as evil letters that will overshadow my life. It only takes one website to start the tears off. On the other i am thinking that i no longer feel a 'fraud' for feeling the way that i feel. And i am now admitted to a community of people who have to fight this thing, and almost feel excited about trying to beat it. And if i do, ill be very proud. I will see life from both sides now; from a healthy person who has every opportunity to do and achieve whatever they wish, and now, as someone who looks at other people and wishes they knew how lucky they are to be 'normal'. I suppose that's not something everyone experiences. I hope, at least that because of this i will no longer be one of the people on Facebook who makes me cringe for complaining that the weather isnt quite good enough for skiing or that they have had to postpone a night out. That is how i used to be. I still wish none of this had ever happened and would still like to live in blissful ignorance - but now that i can't, i may as well make use of the experience.

I am wondering what it will be like to go to the support group - will it make me feel better or worse? I'll shelve the thought until i actually have to go. Right now i am waiting for my boyfriend to turn up and we will have a night in front of the telly and everything will seem ok just for an evening. Tomorrow i am hoping to go for a drive, just to get a free coloured glass from McDonalds....it's the little things! And i hope to visit my poorly Grandfather too. He is in a worse position than me. I need to remind myself that things could be worse and be there for others as well.

Thursday 20 August 2009

So, even though this is sort of ananymous, i find myself holding back a little. I think this is from my exerience of reading other blogs, which are far more gracious and accepting than mine. I'm afraid of spreading negativity everywhere, and i would like to think, that if there was one thing this illness can give me, it's a sense of pride that i can look back one day and say: 'Well, i handled that with diginity'. But i fear that with my attitude, it wont even afford me this. So where does that leave my misplaced and angry feelings? Maybe feeling unable to express them, except with my counsellor, is part of the problem. There is so much value these days, placed on the ability to put on a brave face, make the best of things and not complain. But who is it that places these demands on us? Those who don't have an illness like this, most likely. How can i be advised to accept something by people that wouldnt (or dont have to) accept it for themselves? And yet if i dont, and let myself be consumed with anger, jealousy, resentment, i am pressing my own self destruct button. I must be kinder to myself and others, and not waste my energy on stress that does noone any good. I am still perfecting that skill, and, believe me, it is a long way from perfection!

Yesterday, for the first time, i felt like i cried properly for what had happened. Don't get me wrong, i have cried far too many times before, but always with a sense of 'limbo'. Yesterday, something felt different - it was something i felt deep inside my chest, like a proper sense of physical release, that i hadn't felt before. For the first time i felt 'allowed' to feel the way i did, because there was a reason for it. So even though the diagnosis has brought fresh worries and compounded the idea that this might be here to stay for a while (or even longer), at least it gave me that.

I've was thinking a lot earlier about the idea of being 'forgotten', or in a sense 'out of sight, out of mind'; something that i've been acutely sensitive to, ever since this began. I suppose it is difficult to accept the normality of others' lives, while all this is going on in my own. There are few people that have really cared, some that have outright ignored, and several in between. I suppose i look for reassurance that at least some people try to understand what its like, even for a few seconds, as i know they have their own lives to lead. If i knew they were doing this, maybe i'd trust them not to forget me. If someone just said the simple words: 'That is absolutely horrible. I can completely understand why you're so scared', that would be enough. Sometimes, when people have asked me to explain the situation, i've tried to give examples of what i can and can't do. But somewhere along the line, either immediately or weeks later, they might say: 'But you can still go into town and go shopping can't you?' or 'Could you manage a day out somewhere?' which, as a result, makes me feel like ive not been heard. 'Of course i can't!' i want to snap back at them - but that wouldn't be allowed, now would it?! And this adds to the feeling of being completely alone with this. How can they understand if they can't be made to realise the facts? And if they don't realise the facts, they'll think i am coping and they'll think it's ok to forget.

Well i've dne my bit for the day. I've written my blog and i've cooked a meal myself and done some low level pottering. I should be grateful i can do this when there are some who can't, i'm aware of that much. So that's today...see you tomorrow!

Wednesday 19 August 2009

The day after diagnosis

Well, i always said i wouln't be shocked or upset when i got my definite diagnosis of CFS; i knew i had it, everything points to it, but it was still somewhat of a blow. They told me what i expected to hear - there was a chance i could do well and recover or at least 'get my symptoms to a manageable level', but there were no promises, no guarantees. They told me in their typical matter of fact way, before i left the consultation room to digest the information, and they carried on with their presumably normal lives and careers. Bitter arent i? But i make no apology. I came here partly i suppose, to vent my feelings in a sort of anonymous way. Why for example are my studies now seemingly a waste of time because i cant work just like they can? Why are other people allowed holidays and trips while i sit day after day in front of daytime TV, in a life where cooking pasta and washing up become 'events'. I have spent hours congratulating others on their marriages, holidays, promotions - wishing this person and that person ' a lovely time'. Now i've had enough, and i am begining my blog with an unashamedly self-indulgent rant. But hopefully, even though this might not be admirable and a highlyingracious way of dealing with the illness, it might give a reflection as to how some (and not all of course) people with M.E. might feel.