Water issues

I am going to be very honest in this post about the trouble I have urinating. I put a warning here for anyone who isn’t comfortable reading about this to not go any further.

I mentioned awhile ago I was having trouble emptying my bladder, now this issue has become a lot worse. I have no idea if this is ‘normal’ for other fibro, M.E patients but I really would be interested to find out if anyone else is going through the same thing.

I cannot urinate properly at all, and it’s now taking four/five trips to the toilet to empty my bladder. I can sit there for ten to thirty minutes feeling my bladder is going to burst but I cannot go. When I do go it’s a tiny amount, and the constant trips to the bathroom continue to be like this until my bladder is empty. It’s causing pain in my stomach, bladder and side as I constantly feel I need to urinate but it just won’t happen properly. Not to mention the energy I am using up getting to the bathroom and back. I have mentioned this to the doctor and my specialist, and they give me constant urine tests that come through clear. So it’s definitely not an infection doing it. I am starting to wonder if it’s connected to my conditions or it’s something else. I was thinking it could be my endometriosis but it’s been months now and way before it started playing up again.
I am at a total loss at what to do to help ease this situation. I will again mention it to my doctor on Friday when I have my phone appointment with her and see if she has any ideas. I really hope she does!

I was up most of last night with my nemesis painsomnia. It’s been a few weeks since the pain has been that bad, I was shaking and retching purely due to the severity of the pain. I will admit to bring disappointed this happened, I has hoped they were a thing of the past. I had been paining all day which isn’t unusual, but the pain hit like a punch in the stomach, quickly and with no warning. The pain is easier today though and I’m doing nothing to aggregate it!

Apart from that and my usual daily symptoms I am still feeling better. My neuro meds have made a huge difference and I wish I had been put on them months ago instead of having my old ones higher end to maximum dose. But hey, it was trial and error and I’m just glad I am on them now.

I phoned Atos yesterday and was told I could have an appointment next week, at there offices. I explained it was put down for a home visit and he questioned why and tried tripping me up about my doctors appointments, ‘how did I see them then if I’m mostly housebound?’ When I said my doctor comes to see me he soon changed his tune but his yeah yeahing annoyed me.. So I started saying it back and he stopped doing it.. Mean? Nope just standing up for myself, well laying in bed but the quote still stands 🙂 so he took my number and said I would hear from them in the next few weeks, which I really hope is true but if not I will be phoning in two weeks time to check. They are fed up with me calling every week asking about my claim, but I’m fed up of them taking five months to give me an appointment. It’s ridiculous and I know so many people who are waiting for much longer than I have. I wish I could go out to work, I don’t want to be like this I would be totally well again if I could but that’s not going to happen any time soon. I don’t like being made to feel I’m ‘scrounging’ as I’m not, I just want them to get off their backsides and do something. Here’s hoping!

Out of the flat

A later post today as this afternoons trip to the council took longer than I thought. It took 40 minutes to find it plus the half hours drive there and back, which was a pain as it has been a very hot day here and I was sweating buckets in the car. I was dealt with very quickly when I got in there though, and my ID has been approved so all I now need to do is wait the 6-8 weeks for my claim is assessed and I can start looking for properties.

Again I found how nice and helpful people can be when you’re in a wheelchair. I was in a rough part of town, rougher than mine and that’s saying something! But as my friend wheeled me up the slope to the building a group of girls stood at the top chatting and drinking alcohol moved out the way and one even hit the other on the shoulder and said ‘move out the way Sharn’ . I thanked them and got inside where there was a drunk on the phone standing just away from the queue and he apologised and moved to the far corner of the office. He didn’t have to move that far away but the gesture was there. It is nice that people are so accommodating and kind, it makes things a lil bit easier for me as I am still very new to the wheelchair thing and haven’t been able to get out in it much. 

It was nice to get out, but within half an hour the pain and shakes started and by the time I got home my legs were numb, my body in massive pain and my hands shaking uncontrollably. It’s easing off now, after taking Morphine, Paracetomal, Codiene and Oramorph and my muscle relaxants. It still seems crazy to me how such a small amount of time out can make my symptoms escalate so dramatically. The sitting for that long was what made things worse, I can’t sit upright for more than ten minutes these days before my body starts to throb. My conditions have escalated dramatically in the last three months, in that time things like body and hand shaking have become a daily occurrence. Most of my symptoms are daily now, not sitting up, walking is really bad now, spasms, slurred speech, joint locking, my head lapses and fizzing etc… Not to mention my pain, I am now in pain 24/7, I wake constantly in the night due to it along with muscle spasms, limb jerks and locking. Nothing gets rid of it, my meds just get it to a level that isn’t overwhelming. I wouldn’t even say they eased it anymore, my daily pain is 8-9/10 on the pain register Doctors often judge your levels by.

Looking forward I do sometimes wonder if it will keep escalating, and if it does at the rate and speed it is at the moment, how I will be. Three months ago I didn’t think my muscles and pain could get any worse than they were, but I was very sadly mistaken about that. As with my other symptoms, but they too have joined in with the escalation and I am now at a point that I have to accept that I could get even worse than I am now. My Doctor again said last week that I am deteriorating, not only my health but myself too. That my conditions are causing extreme debilitation and I am now no longer able to do simple daily tasks without there being consequences on my body. Payback as it were. That due to the extremity that my conditions are causing on my body, my daily life has become one that I can no longer function as a person should be able too and lead a ‘normal’ life. All rather depressing stuff, yet I am still here and forcing myself daily to do things I know I shouldn’t but thinking, is making a cup of tea really going to cause that much harm?? 

Unfortunately yes it does. It seems crazy, but making tea makes me exhausted, gives me palpitations and my hands shake with exertion. I am now a woman who cannot multi task! Seriously it’s true! Maybe some man has been given my multi tasking power instead.. nah, now I am being crazy.. 😉

As usual my night will be a quiet one. I had some of my card making items come today which I haven’t yet had a chance to look at so I will rifle through the bags soon. The things I can see look really good, and for the price excellent. I got into a bidding war with one of them. I saw that a bag of 50 mixed signs were on £1.00 with no bids so I kept my eye on it. In the last 2 minutes someone bid £1.50, well I wasn’t having that, I wanted those signs and had been watching them all day. So i bid in the last 10 seconds and the other bidders bid wasn’t high enough or quick enough so I won them for £1.70. Mean? Maybe but they were just waiting to outbid me, and it was only because they didn’t bid high enough the second time round that they didn’t win. After all, all’s fair in Greeting signs and war! ;D