26 April
Hello everybody, is your weekend going OK?

I'm very foggy after a long (for me) drive last night. Sitting in the car worked out OK, except that to start with I was comfortable, but when it was time to drive home I was getting pain in my hip and back. More comfortable in bed than the last few nights though.

I'm not concentrating very well while this pain is bothering me so that's not good for my mental health. I am panicking that it's never going away. The thing about how sitting down makes it worse means I am having to rethink and find new ways plan my activities and rest. Hoping to go for another walk later, but I'm feeling so tired with it all.

28 April
Morning everybody, how are things with you?
It is not such a sunny day today, but there's still a little blue sky. Also a bit more pain than yesterday, but it hasn't come back completely.

My call with the psychologist was good. Started to explore the idea of finding a local physio who is up to speed with EDS. He is going to ask his colleagues if they know of anyone near me. Went on to ask about a GP. All his contacts are specialists, so not expecting any help with GPs, but there might be a known local rheumatologist who can perhaps fill in some of the gaps (not getting my hopes up too much though).

30 April
Happy Thursday! Hope your day is behaving itself.

Eek! I have an in person GP appointment at 2pm. I filled in a form and got a text back almost instantly. Now a bit panicked. I do need to discuss some HRT meds, but I don't know where to start with all the other things that they always back away from, or blame on me, or respond as though I'm being far too tricky.

I am very pleased that I did some crafting last night that was a new skill to me and I had been a bit afraid of tackling. Remember last year I did the weaving workshop? I've still got the pieces of cloth we made and need to finish it. The plan is to cover a lampshade. I need to neaten the edges and yesterday I made a twisted fringe along one short side. It's not bad if I do say so myself. Still no idea how to finish the messy selvedges or to join the two pieces together.

1 May
Happy new month! How is it going for you?

I'm feeling sad and I'm not sure why. It could be something to do with starting some tidying and decluttering yesterday.

Or maybe the doctor. I was thrown because it was a different one who didn't seem interested in talking about the things that matter.
The immediate issue seems far from resolved, but I didn't get much explanation.
I do not feel the communication passport thing has been helpful, or worth the effort, or taken seriously. Now I feel let down but like it's my own fault.

This morning I felt bad that I wasn't up to going out and wasn't ready for dropping my husband at the station but that was harder to refuse. Had to dash back for something forgotten too. Got back home about 10:30 ish, but it's taken me until 12:20 something to get this far. I don't understand how this took so long. All I've done is to catch up here.

2 May
How are you all doing? What's going on in your Saturday?

I have been having some big things going round in my head which I will share when I've finished working through them.

I started off today very sad because I sent something off to auction that I just didn't want to part with. I do think it's the right thing to do, though and I am quite optimistic that this might be the start of a healthy streak of decluttering.

3 May
Hello! How are you doing? Is your Sunday being kind?

I am very behind and not having much fun trying to catch up. My sleep was not very good and I woke up early. Fatigue is beating me. Just had a coffee.

Had dinner with friends last night and that was quite challenging in several ways, although there were good bits. It always amazes me that I seem to be good company sometimes, especially when with friends that I've not seen for years (that is such a worry that I'm exhausted from the beginning).

Will try to have a nice cosy afternoon.

4 May
How's everybody doing?

It's grey and dull here. I've done some washing and hung it out but wouldn't be surprised if it rains. I can't push through a feeling of being stuck today. I seem to have become more drained as the day has gone on.

I've been thinking about fatigue and the confusion with the way it is misunderstood. I think when I was diagnosed with ME/CFS (2000) I believed it meant that I didn't have fatigue before the identified onset. Something about that didn't make sense but I hadn't yet learned to question what doctors told me.

There is probably a lot in my childhood that could have been related to fatigue. I had no clue there was possibly something disabling me and even if I had, I would have been far too afraid to speak up about it. It's just sunk in that I could have done so much better if I'd only known that I was deserving of reasonable adjustments.

6 May
Hello, how's your Wednesday working out?

We've been out for a few things including a little walk. I've had yet another different prescription item turn out to be in short supply so now I'll have play chase the meds again.

I was pleased yesterday that I got another card made to post today and a load of washing that I could have easily pretended didn't have to be done.

7 May
Happy Thursday all. Hope you've managed to vote if it's happening where you are. We've done a postal vote.

Yesterday I did a small repair job using a tool I've never tried before (but had for years). Very pleased with myself. Later did a bit more on my craft project. Other good news is that I've had an email from someone doing a survey I've completed about the experience of ND life in my county. Looking forward to hearing more about that.

I woke up about an hour early and didn't get back off to sleep. Since I've been up I seem to have drastically slowed down. It's like being in a living nightmare and I'm struggling so much. My husband has gone out for the day so I don't have the comfort of his company.

8 May
Good afternoon everybody, how are you doing today?

So sorry for not chatting with anyone so far today. I've had a 2 hour phone call with a lovely person doing a survey of the experience of ND life in our county. It was a conversation I actually really enjoyed. He's very committed to the plan and intends to use our input (with consent) to inform local services and authorities of the reality behind the label. Not sure if that is actually possible, but I appreciate his efforts.

Going out for a little walk next. I wonder what's going on in Tales of the Riverbank today. I haven't seen the swan family for a long time, but the muntjacs are very lively. We once saw a kingfisher in a tree when the flood plane was up, which I found so exciting.

9 May
Morning everybody, what's happening in your weekends?

If anyone is interested, on our walk yesterday we said hello to a family of squirrels, saw bubbles and clouds indicating fish digging in the mud, and I was landed on by a couple of mayflies. I've never met mayflies before so that was educational.

Our council vote and most of the surrounding ones have gone Reform. We border on the lone Green patch.

Trying to prove to myself that I can still do this in the morning and that I'm not declining so far that there's no point. It's getting harder for me to reply to morning posts because on top of struggling with waking up, it seems I'm also struggling to feel actually alive 😔 WTF is going on with that?

10 May
Hello, how's everyone doing this Sunday?

So I was quite down yesterday when I wrote my update. I was tempted to do some gardening.
I've not done any for years because it upsets me so much I fear it would cause a meltdown. Somehow, I was able to cope yesterday and I didn't feel all the horrible things I was afraid of. I got a good bit of weeding done and felt like I was moving more easily than expected. I thought my hip would protest after the pain it's given me recently.

I carried on for several hours and it was really quite uplifting. Maybe it's a sign of things starting to fall into place for me. I was completely exhausted afterwards, but I hope the bit of EMDR I've started is freeing up some headspace.

11 May
Hello lovely people, how's your Monday going?

I've started doing a couple of puzzles recently which is quite unusual. I like puzzles but for years I've felt too much like I don't have time because I couldn't manage doing the basics and general life stuff as well. Maybe this is (like the gardening on Saturday) something shifting to free up more space in my head. I do hope so.

Whatever that might be, I am having new difficulty with my routine of doing daily posts here and chatting to people I follow. I know nobody minds too much, but it feels like I'm missing out on the little bit of connection that is so good for me. It could be simply that the fatigue is ramping up but I have no idea how to cope with it.

12 May
Morning everybody, I hope you have some brightness in your day.

I had a call with the psychologist yesterday and also saw the osteopath. Both were helpful and felt positive.

Today I'm doing a family visit. Hope it doesn't end with nasty pain like last time. As I've been seen by the osteopath I should be alright.

13 May
Hello everybody, how are you doing today?
It's been very showery here. Grey and not fun but you can't complain about the rain when the ground is so dry.

I've had a good phone call with a wonderful friend and it felt really special. Having a call is fine when it's someone I want to talk to, but I wish the decision part wasn't so hard.

I've done some catching up here which was good, but seems so inadequate as the only thing I've done besides the phone call. We did have stuff going on in the morning and I was a bit distracted, I suppose.

14 May
Hello all, how has your Thursday been?
Sorry I've not managed to chat with more people today.

We've had more work being done here today. It was a bit noisy and distracting but I've managed to get a few things done, including a birthday card with some of my new paints.

Now I'm rather wiped out. I felt like going for a walk earlier but there was a lot of rain and we needed to be here for the work happening. Maybe if I'd got out I would have been a bit more lively.

16 May
Have a good Saturday everyone.

We have plans to go out today so I can't take my time and hang around here too long.

We are going to the auction viewing including some of my childhood items I've convinced myself it's time to move on. I don't know if I'm going to get upset, or if I'll be so interested in the other lots that I don't notice too much.

17 May
How's everyone doing? OK Sunday?

Today I have mostly been making my craft room and the spare room look like a bomb site (that is, worse than they were already) before hurriedly trying to get them back into some kind of order.
It has been hard work but I feel better for it.

On the bright side I seem to have stopped accumulating stuff that I don't have time for (not that I'm getting through what's already there).

There's a ridiculous amount of stuff for me to get under control. I'm not sure it's remotely possible.

18 May
How's it going this Monday?

I've had a big day. Autistic adults meeting was nice. Different people. All into Comicon. One of them said I look much younger than my age. A group leader complemented me on looking better than last time she saw me. I do honestly feel a little better and I wondered if I could be turning a corner.

Had a lovely lunch in the vegan cafe then walked home mostly along the riverside. Saw the muntjacs again, even closer to the houses this time.

I bathed and got changed before my osteopath appointment. That seemed to go well.
Just been catching up here. It's been a good day.

19 May
Morning everybody, how are you doing?

I'm not quite caught up from yesterday. It was a good day but now I'm back down to earth, I haven't quite found my feet again. Actually, still wondering how to process positivity after such a long dry spell with hardly any.

Two different people coming to the house today making me a bit on edge (at least they are the more friendly ones). Lots for me to do. It will be a struggle and I'm feeling hungry a couple of hours after breakfast. That may be a sign of low spoons, so forgive me not managing any individual chats. I have been reading as much as I can.

20 May
Hope Wednesday is behaving itself with you.

I think a good word for me today is befuddled. I forgot the time and (luckily my meeting was at home) people arrived while I was in a total daydream.

After that there was some excitement which I still haven't processed. I will try to unfuddle my poor old brain and hopefully get something done. After that I might feel I can share what happened.

21 May
How's your Thursday going lovely people?

I seem to have crashed, which is unexpected but maybe that's because of the unusual excitement yesterday? I think I woke up very early and didn't get back to sleep. I've put some washing out on the line and that might be all I've got in me for today (apart from maybe a snooze).

I have a big weekend with friends ahead and it will be lovely but I'm not at all ready.

22 May
How's it going with you today?

I was up early and got ready in time for our trip without too much stress. Had to adjust to a change of plan with very little notice. Not sure what the event is we're going to but it's something art or craft related.

Maybe I can just snooze for the rest of the journey?

26 May
Hello everybody, how are you doing today?

We've been out and got back home before the heat became too distressing. Things needed collecting from a few places and we popped into a nearby Lidl.

I am still feeling dreadfully lifeless and panicking that it will never end.