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As i discussed in a previous post ( (and in the comments of that post) i am looking into wheelchairs. Today i went to a local charity for advice on what is available, what things to take into consideration, where to go to get the right one and such like.

The appointment was at midday and it felt early – i felt quite groggy and not properly awake, i was aching all over and felt quite weak. The appointment went fine and it was not too long. I had expected to try out different ones to see what suited me but in the end it was just a discussion. This was perhaps good as i am not sure i had the energy to be getting in and out of different ones. The woman was nice, but her voice was loud (to my ears) which did not help me hear what she was saying. I did manage to follow and i think i asked the things i wanted to, although she did not always answer too clearly. She did say in the end that they did not have any wheelchairs for me to try that would suit me, as we decided i need one with specific high back support, or even head support and good lumbar positioning. It was quite interesting that early on in the discussion she assumed i would just need a standard chair, without asking me at all about my issues or medical condition. It was not a major thing and she was helpful and open to listening and changing her mind, but i was surprised that even at a disabled people’s charity i was judged early on how well i look (though anyone who knew me would see i was seriously struggling! My partner could tell, i am glad she was with me). I would have thought they would have certain questions to ask before making such judgements. She did not ask about my medical condition(s), which is fine as it is not necessarily relevant, but to not ask directly about what issues/needs i have from a wheelchair was a bit strange, i thought. Anyway it was useful i think. I asked about reapplying for a Blue Badge (this is for disabled parking for those not in the UK) and also about the NHS wheelchair service and what to expect from them. I will try again for the Blue Badge at some point, despite being turned down before.

I briefly asked about scooters and powered chairs were mentioned but they did not seem viable options. I think i will see how the manual wheelchair suits me and how i find it affects my ability/experience of going out and that will give me more clues as to whether those other options could be useful in future. I think it is a big investment to get a mobility scooter for the number of times i am likely to use it. I cannot magically be able to leave the house much more often than i do now, chair or no chair; there are just so many other reasons i cannot leave the house, other than straightforward mobility issues. Unfortunately.

When i got home i took a while to wind down (despite not being awake in the first place!) as it took a lot of effort to get through the meeting. I went to bed after a while and had some strange sensations that have happened before.

The first has been happening quite often over the last few months, but i don’t remember it happening before that. It only happens when i go to bed in the day, not at night. I get these feelings of icicles running up and down my spine. It starts from the back of my head and runs all the way down my spine and into my legs in a wave of shivers and i feel really cold inside. Today i could tell it was going to happen and i took a hot water bottle and two hot wheat bags to bed with me and i still could not get warm for a long time. After about 3 hours i woke up (i had been asleep maybe an hour) and was so extremely hot i had to fling all the covers off! This is what happens: freezing, then unbearably hot. Very strange. Often i feel quite a normal temperature until i get into bed and it just starts up right away – today i already felt cold so i knew what was in store.

The second is a neurological-type thing. It used to happen a lot when i had a specific song as my alarm tone on my phone and i would hear it when it was not going off. Not like when a song is stuck in your head, but actually as if i was hearing it for real. It has not happened for a while but today it happened with my partner’s alarm. It went off and she turned it off, but i could still hear it. I took my ear plugs out to check if it was really there, and although i could tell it was not going off for real, i could hear it really softly still “playing” in my brain. Very odd. I am not worried as long as i don’t start hearing other imaginary things! I think it is something that happens when i am struggling/have overdone myself. If it continues she will have to get a better alarm ringtone, is all i can say!

Thank you Cusp, of L’ombre de mon Ombre for nominating me for a Happiness Award. I needed a little cheering up on this grey old day – a happy side effect there!

The rules of the Award are:

– When you have received this award you must thank the person that awarded you this in the new post.

– Name 10 things that make you happy.

– Pass this award onto other bloggers and inform the winners


  1. Going out and experiencing some Nature.
  2. Staying in with my Love (that’s handy, eh?).
  3. Being creative & having ideas.
  4. My friends, especially if i can get a hug in person, which is rare but treasured.
  5. Being part of a community online and talking to lots of lovely people.
  6. Reading a good book.
  7. Feeling able to get stuck into something stimulating; a programme, a discussion, or learning something new.
  8. Having a good day when my body cooperates enough for what I want to do.
  9. Laughing – seems obvious, but the opportunity for a good laugh creates yet more happiness I think!
  10. A nice cup of tea drunk while my dog wags her tail at me (yeah I know, cheating on this last one, I couldn’t decide!)

I would like to give an award to Blue Coffee Mug as it is her birthday soon and she is simply amazing and wonderful and gives me much happiness; to Amy S who i know reads this blog and would like to blog herself but has not been well enough to get started for a long time now, but whose blog i would love to read one day; and Geninne’s Art Blog as I always enjoy seeing her colourful birds in particular, which inspire me to keep trying to do more creatively.

Now, i don’t want to jinx it or anything but i have not had a virus so far this year. Last year i had several and even in between them i felt less well than what i considered to be normal. Early this year i did start to take some new supplements as i had a closer look at my multi-vitamins and minerals and they were a bit short on things that seemed important to me. So i have been taking (sublingual) Zinc and more Vitamin C. Also i am taking Iron as although in the normal range my iron tests always seem to come out “a bit low” so i thought why not top it up to be more average and see if i feel better? My Ferritin was 17 and after an internet search that seems ok, but not high, so i thought it would be ok to take some iron for a while as a short-term booster. Also i have been taking Calcium and Magnesium tablets (50/50 ratio) and since December last year i have been taking B12 and also Vitamin D (which i read yesterday has been shown in a study to help with reducing the number of viruses caught by some school children but more research needs to be done to prove this, as usual –

Have these things helped me or is it just luck that i have not caught anything yet? I do feel a bit different, i hesitate to say “better” as there are so many things going on in my body but i had this feeling of fighting something constantly last year and that feeling has gone. Yes, actually i do feel a little better.

On a vaguely related note i have stopped making Kefir. Actually i chucked it all out in a rebellious fit after new year sometime. Probably a waste but it was just so gross, i have always hated milky stuff and although i did enjoy it most days when i made it with soya milk, i had had enough. I don’t feel any different digestively or otherwise… It may have helped me. I cannot tell.

Just a quick post to share my joy at recently purchasing a book holder to help me to read in bed. I will not put the brand name here as i try to avoid product placement, but it is like a beanbag that the book sits in. It is lightweight and quite adjustable in terms of the angle etc (though perhaps not so much as promised). I am very happy with it.

The only position i can read a book in is to be lying flat on my back, this is because my neck is so temperamental that if i put any strain on it, or hold it at the wrong angle too long i get lots of pain and it can trigger nasty headaches that last for days. My weak upper back and shoulders as well as my neck are nicely supported if i am lying down, the only issue was that i had to hold the book up on my elbows which caused muscular pain on the front of my upper arms, as well as in my wrists and hands. My little finger in particular used to go quite numb from holding the book open – some books really don’t like being open and resist with some force!

With my new book holder i do need to prop my head up slightly higher but this has been fine. The bean bag thing sits on my body and my arms can relax between page turns. (There is a plastic bit to hold the pages open). They still ache but i think that will fade or at least it will be from doing other tasks!

I am really enjoying reading at the moment, and am finding it easier than i have in the past, despite my general health levels being fairly static. I really find it helps me to get to sleep and switch off thoughts from the day, or anxieties about the next day, by taking me into a fictional world. I am currently reading two books by Tove Jansson, whose writing i absolutely love. I am considering The Blind Assassin by Margaret Atwood soon, as i have been wanting to read it but we have the hardback copy – not a problem any more!

(have just corrected my incorrect spelling of Jansson, apologies!)

 I have just discovered two white hairs growing out of one pore slap bang in the middle of my forehead – there is not even a noticable mole there, though perhaps there is something tiny on closer inspection. Do i look like i need that? The stronger of the two is curly… Give me a break!

Well, what news?

Since i last blogged i had a few days of feeling a bit better. It was nice. I didn’t do much or go anywhere (i didn’t feel THAT good!) but just stayed at home and enjoyed choosing when to have my daytime nap (rather than collapsing in a heap an hour or two after getting up) and feeling more alert. Maybe i was sleeping better at night as i seemed to get away with less sleep in the daytime. I even managed a bit of arty activity on a couple of afternoons. All nice. Had a couple over for a meal the weekend before last. I rested all day and felt good and even a little sparkly. Managed to see the evening to it’s end and did not even seem to have major payback, just a bit of extra sleep.

It did not, of course, last long. By Wednesday (the dinner party was Saturday) i felt really awful again. In fact i have spent several evenings in bed and had trouble eating/digesting my evening meal. I usually feel pretty good by some point in the evening so this was disappointing and frankly boring as i already spend a part of the daytime in bed to prepare me for the evening and spending time with my partner. Despite this i went to my friend’s house on Friday evening as i really wanted to see her. I did feel it was a bit risky but as all i had to do was be driven there and back and lie on her sofa for a couple of hours i felt is was not asking too much (i rested all day)… but it was too much (though nice to see her) and i have not had a good weekend this weekend. Just sitting on a chair which is not my “one and only comfy chair” and being slightly twisted in order to speak to my friend was enough to create such a lot of pain which i did not feel after the dinner party despite talking for longer. My chair is magic. And my muscles are rubbish!

I did eat some biscuits that the couple who came over for a meal made. They had gluten-free flour in, which contains potato flour, which i know upsets me and though it was a delayed reaction and there were no major tummy upsets i ate them over about 3 days and things have just been feeling not right since. More pain and feeling strange – nothing i can explain very easily. In a way it is encouraging as if i had only eaten a couple i would have probably been fine… but who can leave them sitting there? Not me. I have not had much in the way of cake/biscuits for a long time and they were like chocolate brownies… yum! I have bought some rice flour and buckwheat flour this week to try to find some kind of pancake/biscuit/bread/stodge-type thing i can tolerate. Woman cannot live on rice cakes alone… it’s winter and the hot cross buns will be taunting me soon – must find a substitute! Pancake day was hard enough.

Other news (i can’t remember when) – i went to the doctor to get a letter and a sick note and it was not the usual person i see, though i have seen him in the past. He was really nice, did not rush me and gave me a sick note for 6 months instead of the usual 3 months and said things should be done as telephone appointments when possible. I LIKE him! Common sense at last.

Also i am in the process of maybe getting a wheelchair. I have been referred to the NHS service (though maybe a long wait) and also i am going to a local charity to discuss my needs/issues and they will assess what type is most suitable for me. I think that is useful before i go to see the NHS people so i know what i need and don’t get pushed into something. As i understand it once the NHS assess me and “prescribe” me a wheelchair (if they think i qualify for one) i can get a voucher of the equivalent cost of that wheelchair to put towards a better one, if i do not think the NHS one is the most suitable. It seems a little complicated and involves yet more appointments, but what doesn’t? I will blog about this separately i think, once i know more… actually i have had a blog post half written for about a year about why i DON’T use a wheelchair much, maybe i should look back at that for issues to raise when assessed – see if they have any solutions for me!

I had to cancel a hair appointment today. I felt great relief to not have to go and have not had a bad day as a result. I knew that if i pushed myself to go this week would be like the last and i cannot face that. I have arranged for a mobile hairdresser to come next week instead. I really hope he is good and doesn’t talk my head off and that it feels an easier experience than going to the salon. Hair cuts are one of the most draining appointments to handle: smells, listening and talking on top of background music and other noise (like hair dryers and children) makes my brain seize up, the crazy neck-breaking sinks that leave me with a headache and neck pain for days, travelling there and back, unsupportive chairs… You get the idea: It’s a nightmare. After talking about this on facebook it seems i am not the only one who finds this to me a really hard thing to do!

Also, i am writing an itch diary and doing things out of my usual routine to test my itchy problems. This is because i have a dermatology appointment in a couple of months and i want to take as much info/evidence as i can. I do not want to be dismissed in the first five minutes! So far i have not itched so very much so the diary is not very exciting. It was really bad the week before i started the diary! Sure it will flare up again.

Good news is that the sun came out today and shone all day – i had the windows open and it felt like Spring might be on it’s way. Of course there is more sleet/snow forecast for later in the week but it was a nice break. The birds were singing.

ME/CFS Awareness

ME/CFS Awareness


March 2010