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Some good news!

1. I am getting a wheelchair in two or three weeks after being assessed (it was not a gruelling assessment – just a nice woman who had a quick chat and then measured me up!). It is an NHS wheelchair, so it will be on long-term loan to me and they will pay for upkeep/repairs. It will be lightweight and have a headrest and a cushion! I am hoping it will be comfortable.

2. My application for a Blue Badge (disabled parking permit) has also been successful! I think this will be really useful and take the stress out of parking in many situations. It may open up some new options for places to go.

3. The itching has improved. It is still coming and going but is much better and almost as significant is that the night-time (drowsy) anti-histamines i am on seem to be really helping my sleep. The combined effect is that i seem to be sleeping better and my baseline for activity has been raised a little and i feel less manky in general. I have had some really bad days, but in each case it has been one day of payback which i can directly attribute to having done something; rather than just a bad day for no apparent reason. I am liking this new phase very much!

I have left the house a bit more than usual (at least once per week if only for a gentle/brief thing) whereas before i was not going out other than for essential appointments for weeks on end. A big change for me. Things seem a bit more possible and i feel i am recovering faster from doing things. I am still needing to have a sleep in the day, but i am finding it harder to get to sleep until a bit later in the day and am sleeping a little less. Before, I would often get up, have breakfast and check my emails etc. then have no choice but to just crawl back to bed. I feel more alive now. It is not a giant leap, but it is such a welcome break from the drudge of the past year really, which has seemed so retrograde overall, maybe this is the start of a better phase… Early days, it has only been two or three weeks! I know i am getting ahead of myself and am probably overstating the change, but it feels dramatic to me. Fingers crossed this “side effect” of the anti-histamines does not wear off… my mood was really struggling before – the itch was really driving me into depression as it was hard to cope with. I am feeling so relaxed now in comparison and my other pains are better too!

The best things have been going to a local art gallery and seeing the Hokusai print “Wave off Kanagawa” with a friend, and then, a week later, going to Cherryburn with my partner, where Thomas Bewick the local woodcut print-making legend was born. The afternoon at Cherryburn in particular I felt really good and my stamina was good. It was the best I have felt for many, many months. The sun was shining down on us and I felt so lucky to have made it out and to be enjoying a day trip with my partner. It was fun. We even stopped off in a pub for a cuppa on the way home (yes, that is two separate locations in one trip out!).

3. I have some lovely visitors coming to see me over the next few months, some end of May, some Mid-June and then another in August and we are going on holiday with her to a cottage up the coast from here – I am counting the days til my summer holiday! I did not think I would be able to go anywhere this year as I have been finding travel impossible, and also the itching has really limited my ability to sleep anywhere but my own bed (if i am lucky) and i cannot go anywhere without a bath, as showers are also a big no-no. I am still a little concerned about it as my skin is so sensitive to “lumpy” mattresses (and a million other things), and painful even if not always so itchy, but things are much better than they have been and now i think i will survive. We will be close to home anyway if things go wrong, but far away enough to feel like it’s a holiday!

4. I continue to be able to read and have just read The Colour Purple, by Alice Walker. It has sat on my shelves for over a decade and i am so glad i decided to read it at last! So well written, interesting, moving and grounding. I loved it. I have also bought two books in a second-hand shop (it was so great to be able to go in and browse them last week on a quick trip out!). Lolita, by Vladimir Nabokov who several people tell me is worth reading but i have not read anything by him before, and The Lovely Bones by Alice Sebold. I don’t know which to start with!

5. Just remembered another good thing! I am doing more drawing. I have been inspired by Michael Nobbs and his “75 ways to draw more”. The results are a bit mixed but at least i am doing something rather than waiting til i feel good enough to do something i think i actually “good”. A few minutes here of there can produce something, and something is better than nothing! I am being brave and posting them onto Flickr, as there is a “75 ways…” group there. I have had some nice comments from people who are evidently much better at drawing than me, which is generous of them!

So in summary, life doesn’t feel so bad at the moment, long may it last.

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

So, TEN THINGS THAT MAKE ME HAPPY:

  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.

(This is one of my “Blogging for ME Awareness Day” posts – see the rest of my posts for this event here, and what others are writing/doing here!)

I was reading this great blog (as part of Blogging Against Disablism Day (BADD) click link to read more!) and saw an excellent paragraph in it, which was actually taken from here:

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

This really made me smile and pins down something i have been bothered about in the back of my mind for some time: Why does it annoy me so much when people say “You are looking well”, or “You sound good” or whatever. I always feel a bit guilty about feeling so prickled by it, when they simply want me to be feeling well and to be improving with all their hearts and are just expressing it… but it feels like it is just a conversation to make them feel better about it; to let them off the hook; to avoid facing the truths about my illness. When i try to explain that they have simply caught me at a good moment and that in general nothing has changed, i get this look, as if to say “Why are you denying improvement? Don’t you want to get well? Be grateful for what good times you have!”

(I must say i am more tolerant of this when it comes from people very close to me who do know largely what my life is like or who see/speak to me regularly, as maybe i do sound a bit better than the last time, but i am safe in the knowledge that they know this does not mean anything more than that, that right now i can speak, but afterwards i will be exhausted and i may not be able to…)

I may look well because i have spent all the day up to this point (and probably yesterday too) making an effort to be clean, have had my hair washed, to have sloughed all the unsightly dry flaky skin off my face and moisturised, to have got out my nice clothes, rested effectively and eaten sensibly and taken a sleeping tablet, a painkiller and all the other things that i need in order to ensure i can function for this occasion of seeing you. I may even feel quite good after all this planning and preparation and be enjoying myself in this rare foray into your world, but like Cinderella, the mirage will soon fade, and i will feel so ill and have so many extra symptoms over the next few days in “payback” that i really cannot just forget this and enjoy “looking so well”. It is not your fault, of course, but how i look at the moment is irrelevant to the bigger picture. “Looking well” can sometimes feel like a curse and a barrier to understanding.

The other common exclamation is “Isn’t it lovely weather, that must really help you!” It helps me in the same way it helps anyone else, and yes, it is nice now that spring has come that i can sit in the back yard and get some fresh air and sunshine (occasionally) and have a change of the usual four walls to some al fresco four walls with birdsong and the like, but it is said to me as if it will actually make me well… My illness is not caused by depression, i actually don’t think it is perpetuated by depression (it just makes it harder to live with). To suggest that all i need is some sunshine for my severe and chronic health condition to improve is really irritating, and again i feel so guilty for being grumpy about it and usually just say, “oh yes it is nice to have nice weather” (and think “but i feel as ill as ever)”.

So now you are reading this and thinking “well i didn’t mean anything by it, what the hell am i supposed to say then? Nothing?” No of course not, but please, just ASK how i am. If you must, you can ask if the sunshine helps me(but don’t expect a sunny answer to that one – my patience is wearing thinner and thinner on this issue).

When you do ask me how i am, of course, that opens up a whole new set of issues: Do you really what to know how i am? Do you want details? Do you want to understand what my life is actually like? Or do you want a “Fine thanks” or a “Not bad today” with no details? It is hard for me to know. Even if i know you really do care and want to engage with it, how can i explain how i am? How can i quantify my wellness or illness in a way you can understand? Sometimes i can say i am “better” but do you know what that means? Do you think i am on the way to getting properly better? Or do you know i mean a-tiny-bit-that-only-a-chronically-ill-person-would-notice-as-an-improvement-and-it-could-all-change-in-the-next-five-minutes-better?

I find when asked “how are you?” these days, i just say “i am ok right now thanks” or something along those lines, because, of course i have been better, and i have inevitably been a lot worse (well i am having a conversation, so evidently not SO bad) so everything else is just in between these two… how i am changes minute by minute, hour by hour and day by day but also not a lot really changes.

So i appreciate you asking, and that you do care, but know that these questions are so loaded for me, and there is a lot more going on behind my reply…

what is this? a positive post on my “illness” blog? wonders will never cease! brace yourselves – no moaning will follow!

On Wednesday i received a wheelchair from a hire company. I was expecting a visitor for a couple of nights so got it in time for that (but she has postponed her visit for another time), although i am keeping it for two weeks in total as my Mum is also visiting this Thursday for the weekend, so we can hopefully get out of the house a bit. I am working on a list of possible excursions so we can pick one when the time comes, according to wellness and weather.

On Friday my partner took me on a “walk” in the wheelchair, with the dog around some streets by our house for a test run. I held the dog lead and she pushed me. It worked pretty well, and the wheelchair is light and easy to manoeuvre (It is called Breezy Moonlight, in case you are interested, and is very comfortable). The only problem was that if i had to pull on the dog lead, it did affect the direction of the chair, but this was ok except when she was barking and pulling madly at another dog! I saw streets i have never been down before and we were out half an hour or so and the sun was even almost out… I was not feeling great however, particularly earlier in the day so was amazed…

…by what i managed on Saturday! I booked a shopmobility scooter for midday and got a taxi there, with my partner. I did not think i would be feeling well enough to stay out long but was just desperate for some fun!We went around two or three shops, and i bought some knickers (i have been desperately needing some new knickers for ages but have not been able to get to a shop for months, and although my partner can get some for me, i really wanted to chose my own! So i was very happy with that) and then we went to Fat Face, which i love, and i got some dark grey cords and a stripey zip-up jumper with a hood, and got a free t-shirt 🙂 After all that excitement we had lunch at my favourite place in town, i had a plate of anti-pasti (sundried toms, mozzerella, beans, little mushrooms, grilled courgette and aubergine etc etc) and then a cup of thick hot chocolate that you have to eat with a spoon! Yum. By this time it was 3pm. I was starting to fade but me partner just had a couple of things to get so i decided to stay with her and go home together. We eventually returned the scooter at 4pm and got a taxi home.

I was on such a high that although i lay down a while i did not go to bed properly when i got home, and had a strange high in the evening where i was warbling on about rubbish and singing and was concerned that i may be annoying ( i was assured not, but i am still not sure!). I was so nice to feel so happy and to have been able to do so much after what seems like weeks and weeks of feeling bad almost continuously.

I slept well last night, and went back to bed late morning for my customary extra hour’s nap, but have not yet felt the “pay back”. In fact today has been good as well! I have been out for an hour in the wheelchair in the woods near my house (which i have not been able to set foot in for literally years) and we covered a lot of ground – it has hardly changed since i was last there though, which surprised me. It was nice to smell the woods, which had a hint of autumn about them and toadstools popping up all over.

Then i came back and made two little crumbles! I really miss cooking and feel a real sense of achievement. They also taste great! one is plum, and the other is apple and damson. They were actually very quick and low effort to make. (I don’t have to do my own washing up, so lucky!) I have a little headache brewing despite a quick afternoon nap but am fairly unscathed and just so pleased to have been so active and been out and about so much. My good energy has timed well with the the weather too as it has been dry and even a bit sunny.

So happy days! Just going to rest up as much as possible over the next three days until my Mum visits, and hopefully i can carry on this good trend…

ME/CFS Awareness

ME/CFS Awareness

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