The week begins

Have I mentioned how much I hate the heat? Yes? Well I haaate it so much! It’s so humid! Now I can handle the weather but the humidity is horrible it’s making my chest tight. There is no air,..ok that’s a bit of a silly statement as obviously there’s air or none of us would be alive. But it seems as though there isn’t any and I am just in a constant state of sweaty, damp and sticky hair and body which feels disgusting. It’s as though im a sauna, maybe I should get that body wrap that you wear in saunas and takes inches off you. In weight not height as I can’t afford to lose height. I’m a respectable 5ft 5 and a quarter inches.. And that quarter inch counts alot! Doctors etc laugh when I add the quarter but find it’s true when they measure me and I make sure they write the quarter down. Most people assume I’m taller as I look taller but nope my height is deceiving, probably because I have long legs that hide my squat upper half. Seriously, my belly button is nearer my bosom than should be medically possible. I’m so out of proportion, as though someone pulled my legs and squashed my body at the same time after I was born. It was the 80s after all, a lot of strange things happened so it’s possible it could be true.. 😉

I am resting up now for the rest of the day. I’ve done some tidying and am now knackerd so I will not push myself to the point of pain exhaustion. My new meds make me very tired all day and a bit out of it. It takes me until mid afternoon to feel with it. But the trade off of no leg locking and less pain is more than worth this side effect. It’s a teeny weeny blip that I can easily deal with.

I start my new pain meds tonight, apparently they’re very strong and I can’t take my codeine with them which I don’t mind at all as they don’t work anymore. They’re slow release, much like the morphine tablets and I’m really hoping they help. Seeing as my pain specialtist has only given them to four other people and they can only be prescribed from the hospital pharmacy I have a feeling they are not only strong but effective. At this point I am willing to try anything that has a chance of working and helping me live a life not just an existence of pain, debilitating symptoms and darkness. Life is looking up, and I hope it continues to proceed that way. I have a feeling it will, and my gypsy instincts are rarely wrong 🙂

New tablets

A day of resting up and making sure I’m not doing too much today. I hurt badly but I knew I would after Mondays excursion.
I don’t want to get too hopeful but the new drugs do seem to be helping in a way I never thought possible. I have not had leg locking in 4 days, yes 4! This is a miracle, it’s been 8months since I didn’t suffer these. I don’t want to get too excited but on the other hand I would dance about it if I could 😀 it’s odd because I keep expecting them to happen, my leg muscles tighten up as they do before they lock but then they don’t lock, just continue to tighten. The absence of the locking is so weird, and I am keeping everything crossed and gypsy luck this is the start of becoming a lil better! 🙂

I have a physiotherapist visiting me tomorrow morning. I have no idea what she is going to do, but im hoping she us going to help teach me stretching exercises. I daily stretch my limbs, even in bed as it does help my muscles. It’s extremely painful to do, but I try to fight the pain and stretch because I know they will constantly seize if I don’t.
She is coming at 10am so by lunchtime I will either be armed with useful techniques or techniques that are totally unsuitable and impossible to do. I’m hoping it’ll be the useful ones! 🙂

Mobile phones and bath seat

Last night I did something so stupid even I couldn’t believe it.
I had managed to make pasta and wash up and was so pleased that I opted to put a wash load on too. I gathered the clothes on the side before putting them in the machine and was really chuffed I had managed to do three things in just one evening. I toddled to my room to rest and looked on my side cabinet where I usually leave it and it wasn’t there. I didn’t worry as im often forgetful and started to look around for it. Mild panic set in as I looked downstairs too and nor I or my son could find it. Then I heard a clunk.. Clunk.. From the washing machine.. Yes, I had put it in the machine while picking the clothes up from the side where my phone must have been underneath the pile. My son and I both knelt down to look at the machine and there was my phone, happily spinning around in soapy water on a 40dg cycle. I put it on rinse and drain and managed to get my sopping phone out. There I rested it in a bowl of rice until the next morning where by some miracle it worked! It’s a lil water damaged but I can put up with that, I just can’t believe it happened in the first place! They say everything happens once, yes well it had only better be once as I cannot go through that rigamole again!

Today my luck seems to have changed. I had my bath lift installed, my stair railing fixed and the letter from my doctor to take to my assessment. Both the lift installer and the builder/fixer arrived on my door at the exact time which was amusing. I sent one to the bathroom and one to the stairs. Both were lovely though and chatted as they worked. I am extremely happy with the bath lift and aim to use it asap. My legs have decided to swell and lock today so no chance of having a bath yet. But in time I will enjoy laying back and being lowered into a hot bubble bath and maybe float a few rubber ducks too 🙂

My father came round to drop of some bits of food, lighters, and black bags this afternoon. He also had my drs letter which I am itching to read! I will leave it though and trust my Dr to have written the full truth of my health. I now have her letter, my specialist confirming m.e and fibro, my ot contact numbers, house move forms and letters confirming my up coming appointments. Hopefully this will all be enough to show them I am not faking.. I hope!

I am going to rest up this evening and hope my legs go down and the pain becomes less intense. It’s a lil bit too much pain for my liking and I have had to take an extra boost of morphine just to get me to the bathroom and back into bed. By past experience I know this usually lasts a few days, the pain, cramping, muscle locking do love to stay around and party for as long as they can. Eventually they are fazed out by morphine, muscle relaxers, tens machine, codeine and morphine tabs which is great, but until that point I waddle around trying to place my feet in an order which I hope doesn’t make me fall over and putting as least possible pressure on my feet so I don’t swell even more.

So a night in bed, taking pills every two hours, electric blanket on high, tens machine on,orthopedic cushion, laptop, tea facilities and chocolate to hand is my plan. Hoping tomorrow will be better, but thankful that today things were fixed to make things better in my home. 🙂

Good news! :D

Wow, I don’t know if the fates decided to grant me a wish but I recieved a letter today from occupationial health and have someone coming to see me next Thursday for a home visit and assessment! The letter said they are going to assess my home due to the difficulties it has for me, the stairs being dangerous, bathroom and non accessibility it has. I am beyond happy and hoping this is a step towards recieving the help I need 😀
It’s odd how good news affects the body and mind. Im still pretty unwell and my arm and hand did infact seize yesterday as I thought, but the lifting of my spirits due to the letter has helped me to cope with it much better. I haven’t sworn once at my useless limb today, now that’s progress! 😉
I also had my doctor phone me about my blood results. My vitamin D is at 10 when it should be 75+ my vitamin B is really low too and my white blood cells are really high again. High white blood cells usually happen because they’re fighting some kind of infection, but seeing as I’ve neither the flu or a cold she doesn’t know why they are so high. So I had to put in a urine test within the hour, which my father picked up and dropped at the surgery. All dignity goes when you’re ill! We had a laugh about it though, I said here’s your easter present and handed him the pot.. 🙂 I also have to have repeat blood tests asap and am now on a high dose of vitamin D and folic acid. I should be having vitamin D injections but as I cannot go to the surgery it’s tablets for 3 months instead. So that’s now 8 different sorts a day, I’ll lose count eventually! I’m not too concerned about the white blood cells, it’s the third time in a year it’s been too high and im still here so it can’t be to serious. My doctor isn’t surprised about vitamin D as I’m 90% housebound it’s bound to happen.
But even the results haven’t fazed me, the OT letter has made me happy and I won’t let a few bad test results ruin that. It’ll just mean adding 5 more tablets to my daily 30+ amount and if I have an infection the results will show as and when. For now I am going to start writing a list of things to discuss with the OT, and keep hope that she will be a great help to my home conditions in the future 🙂