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.

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