Tuesday, 13 April 2010

Well its time to update this sorry blog again! The last few weeks have been peppered with a bit of fun; which has been nice. I went to visit my cousin's baby in the end - he is beautiful - i had a little hold, which was terrifying, as i've never held a baby before! But he is such a pretty babe - i admire my cousin so much looking after 2 kids - i wouldnt know where to start. It was good to see her looking well and to have a good catch up with her.

Ive also been to a friends Birthday gathering, which was great fun; particularly watching people playing the cornflakes box game (i gave it a miss myself, far too physical for me!) But it involves bending down to pick up a cornflakes box with your teeth. It was hilarious, if not a little scary watching the more elderly relatives getting into odd positions trying to pick the box up. Am surprised noone ended up in A&E really. One guy nearly head-butted the television, and my mate's mum randomly fell over into a pot plant and spilt her drink all over her dad, (who was not pleased). It was ideal for me though, because i could just sit on the sofa the whole time and chat to old friends. I suffered for it the next day; spending most of it having to lie down, (even though i did nothing physical), but it was worth it for the fun. Sometimes i think mental stress and thinking can be worse than the physical, or at the very least, just as bad.

One thing that does annoy me, is that whenever i have to talk to anyone who i havent seen in a while/have never met, my heart starts beating really fast and i feel 'keyed up'. I cannot seem to stop this happening; t is totally involuntary, but fits with the theory that CFS sufferers produce an excess of adrenaline the whole time. from experience, i think this thery probably best fits my case. It happens when i am not nervous or panicking, and no doubt, wastes a great deal of energy. This also reinforces the theory that those with CFS are unable to tolerate stress; and i dont mean 'stress' in the true sense of the word, but rather anything that requires thought or the need to be 'on one's toes' slightly. The body just seems to over-compensate.

So today i went to my first appontment with the clinical psychologist. Just to clear up, CFS is not a psychological disorder, but a neurological one - however this doent mean that there arent psychological effects felt as a result of the condition. The appointments are to discuss any fears i might have, general things that might be worrying me and how i am managing pacing my activity and could i do it better? Although i feel physically and mentally drained after today's session (spent much of the day restain again!), i am sure it will be beneficial.

Thursday, 4 March 2010

It's lovely outside, but i can't decide what to do...

Well its a beautiful day out there - in early March as well! But this is one of those days where i can't decide what to try to tick off on my 'to do' list. In my bedroom i keep a small plastic whiteboard, and, every week i write down a few things i want to try and achieve. This affords me two pleasures; a)being able to write on a whiteboard (yes, i have never grown up) and b) being able to tick off the items as i do them, which gives me some satisfaction. This whole goal setting thing was something i learnt from the ME group. I have found it helps: having definite goals rather than vague ones makes them easier to work towards and helps me to plan my week; so i dont feel quite so useless. I know i can never do everything each week on the lists i make, but just ticking a couple is good.

On this week's list is the intention to buy some flowers for my cousin who has just given birth to a beautiful new baby. However, we are not going to visit her until next week (when i can get a lift there from my Dad), so theres no point buying them yet. Another is to deliver a long overdue Xmas present to my friend; but she has not replied yet as to when she's free, and thirdly, i wanted to visit my Grandad's graveside, because i feel like i would like to go and send some time talking to him for a while. However i know it will be far too much for me to drive all the way there and walk across the cemetary and would make me ill for a good while afterwards; so i dont quite know why that one is on the list - wishful thinking, i guess. Added to this i have to save energy for the weekend as my boyfriend is coming to stay.

This, i suppose is the problem with the limitations caused by CFS. I can do little things, but they dont always fit in with the situation/other people's plans, so very often, on days such as this, i end up doing nothing. Then comes the guilt at not having achieved something that day. Oh to be able to do anything i please at the drop of a hat.

It has occured to me that i have some old clothes to sort out - but that seems like a waste of a nice day, as do my inane ramblings on this blog!!

I did nothing yesterday either. I was hoping to go with my Dad when he took my dog to the vets, but i didnt feel well enough. Actually we had rather a scare with her yesterday. She suddenly became very lethargic and coudln't even jump up onto the sofa. She is now on a course of antibiotics for a suspected chest infection, although the vet wasnt sure she had one. she thankfully seems a lot better today, although still not quite as bouncy as usual. I was so worried yesterday and in tears. My dog is my life, my ray of sunshine.

Anyway i had better sign off, before the day is wasted away. Back later :)

Sunday, 21 February 2010

A lot has happened

Well once again it's been months since i updated this blog. This is partly owing to all the things that have been happening lately, and the fact that i am trying to wean myself off spending too much time on the internet. How can i summarize everything thats happened and its depths of emotion in a few short words. The first thing is, shortly after my Birthday, i got engaged! My fiance and i went for a drive to a local beauty spot where he gave me a watch as a gift. He told me to turn it over and on the back he'd had had it engraved with the question! It was very sweet so now, i am trying to get better so that i can have a 'normal' wedding day, with dancing and standing around for hours etc, like normal people do!!

On a very sad note, we lost my beloved Grandad shortly before Chrsitmas. I wont go into the details and feeling too mcuh on here because they are private and words can do justice to how we felt and how much i miss him. On Chrsitmas day we opened his Xmas present, which was a small Chrsitmas lantern that plays music, with ice skaters around a Chrsitmas tree. I put it on the windowsill where i hoped he could see it, and sat for a while. I still believe he is with us and i stil talk to him. I know if i was gone i would want people to believe that i was still watching over them; just because we cant see him, doesnt mean he cant see us. I always wear a locket with his photo too. I love you Grandad, you will always be in my heart xxx

I have just returned from staying a few days with my boyfriend and i have several things on my 'to do' list - one of which is to take grandad some flowers and to try and get to the local shop to buy a Birthday card for my friend. I like to have little goals to set myself each week, it keeps me going. It's one of the many things i learnt from attending the M.E. rehab course, which i have found has been most helpful and facilitated some recovery. Although my energy is still well below normal, i am finding that the relapses are not as severe and of shorter duration, which means i can do things slightly more often, which, in my book, is great! The course finished around 3 weeks ago now, and i met some good friends through attending it. It turned out that i had spent the weeks leading upto it in unjustifiable dread, because it turned out to be a very positive experience. It lasted a couple of hours and was run by 3 really nice ladies who talked us through ways of managing the illness, and some weeks we had guest speakers (psychologists, dieticians, etc). It was held in a Methodist church and there was a little kitchen outside with free tea and coffee where we used to have our (regular) breaks and chats! Cant be bad!

Anyway, as promised, here are some of the things i learnt that helped me a great deal. Please note this course was for people with mild to moderate M.E.

Plan scheduled rests into your day (at same times each day -as many as you need), but keep them short (no more than 30 mins), and do something slightly physical afterwards to get going again. If you rest any longer than 30 mins at a time, your body slows down and its harder to get going. Even just walking around the room or sitting up every half hour helps.

Use relaxation exercises as part of your rests - this is vital! You must rest your mind as well as body!

Rest in complete silence (unless using a relaxation CD) DONT use these while driving though obviously!!

Try and get a balance of physical/mental/social activity each day - dont do all physical one day, all mental the next, for example.

Eat something every 2 hours or so, even of its only a biscuit.

Eat a balanced diet. You can have foods with a high Glycaemic index (please google this), as long as you mix it with foods with a lower glycaemic index. This helps keep your sugar levels more blanced and helps avoid energy crashes.

Short pauses when doing things helps lower adrenaline and gives the body a rest. Pausing for 3 mins can reduce adrenaline by 50% (apparently!)

Dont do the same thing for too long - mix and match mental/physical/social activity so that you are using different parts of the brain and allowing each part of the brain time to rest.

Do one thing at a time - dnt have tv on in background while you're trying to do something else, etc.

Get up at same time each day, get dressed if you can.

Set a goal each day/week however small it doesnt matter!

Use the tortoise and hare approach. For e.g. you might not be able to do housework for an hour, non-stop, but if you break it into chunks of 15 mins with rests in between, it might be manageable (This is only an example, it must be tailored to your own needs).

Improvement should be seen as being like a staircase rather than a continual curve upwards. So if you're at a certain 'baseline' activity level which does not worsen your symptoms, maintain that for a while before increasing -you should not try to increase activity on a daily basis. Increases should only be of about 10% of what you can currently comfortably manage. Once an increase has been made, you should monitor the effect for a week or so to check its not too much for you. If it is, you should lower the 'baseline' again. It is important to find the right balance between rest and activity.

Hope this helps!!

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!