Injection

So my patch idea helped a lil but the pain and sight is still terrible.

I resemble a pirate so much, what with my crippled leg, shoulder walk, patch and scowl.. All I need are candles in my hair and I would be Edward Teach, Black Beard the pirate, and he came from Bristol! He was born five minutes away from me.
Arrrr I be like sailing the seven cups that need washin up, the sea will ave to wait!
😉

In other non pirate related news I arranged my vitamin D injection and it’s Monday at 2pm. And the best thing is the injection goes in my arm not my bum as people kept saying! Oh yeah, no stifling inappropriate jokes for me now! ;D

I am trying anything that could help me, even if it’s just a lil bit. The injection makes the vitamin D go straight into my system and I reckon it will help. I’m to have one each month until my levels go to the ‘normal’ 75+ instead of under 10. If it helps I am happy to continue it, I’m really hoping it does. Fingers crossed and gypsy luck! 🙂

It is beyond hot here at the moment, with my pain causing me to have a constant temperature and my having to lay/sit on an electric blanket most of the day is turning me into a human sauna! I would charge people to have a sauna but they’d have to sit on my lap to get any benefit and I’m not keen on that idea. I’d be covered in their sweat too, yuck! I’d rather be poor!
🙂

My father is dropping off some of my billion of pills today, so it’ll be great to see him and have a catch up.
I’m very similar to him and we are very close. Even more so since my illnesses. He’s always there for me, for anything and that’s rare but runs through my family. I am incredibly lucky to have such support and help from my family, we are very close knit. I feel for people who don’t have this and always hope they have someone, be it a family member, friend, partner. It’s important to have someone, chronic conditions are so isolating, so emotionally difficult that being alone coping with them must be a nightmare.

I may be severely chronically unwell but I have support, laughter, help and people to talk to if I need it. As far as I’m concerned I’m extremely lucky, and I am grateful for all I have. I have far more in my life than I don’t and no matter how bad things get I hold onto that and things don’t seem that bad after all 🙂

Crash and flare

I’m in a massive flare and crash at the moment.
I’ve been feeling off for a few days and I had a feeling I was going to flare and crash which may sound silly to anyone who doesn’t have chronic condition/s. I noticed my muscles becoming a lil bit tighter each day, my hands and feet swelling in the day and being swollen when I woke. My body felt out of synch, becoming slower and more achey my mind more confused and unable to think properly. I woke yesterday feeling unwell and in a lot of pain, my muscles so tight by the early evening I could barely walk or move. Today at 3am I woke in hell, I couldn’t move for an hour after waking, and when I did move I wish I hadn’t. My muscles are screaming at me, the pain is everywhere and my bone pain is back.

I’m disappointed and slightly annoyed, after a few weeks of being much better my body has whipped the rug from under me and is reminding me that my conditions are always here. The worst thing which overrides every pain, muscle lock, bone ache is disappointing others. I was doing so well, hoping this was a turning point and everyone was so pleased. Now I’m back to square one and I hate that it’s others I am disappointing after their hopes were raised.

I spoke to my specialist yesterday, she has taken me off the pain meds she prescribed and can’t give me anything else until my MRI, x ray, ultrasound and blood results are back. She received a letter from my rhumetologist and wouldn’t say exactly what it said, just that my muscle swelling is off the chart and he’s investigating other possible conditions. I managed to get her to say he thinks there’s something more going on, sneaky of me but her reaction prompted me to do so. After all the letter was about me! I hate all this, oh I can’t tell you exactly stuff.. Um excuse me, he’s talking about me? It’s my body that’s being discussed and it’s my right to know what’s going on. So I have to manage on oramorph and codeine again until my results are through, which will be in a month or so. I have to wean myself off the pain med as my body will go into craving mode if I don’t.. So I can’t take codeine for another week or so and just have oramorph til then… :s

I understand why my specialist can’t prescribe until my results are through, and I need to wean myself off the drug. I don’t blame her, and will even think about her suggestion of being an inpatient to be monitered. I understand but that doesn’t mean I’m happy about the pain that is and will continue to raise it’s ugly head until I get my results. That I’m happy I can hardly walk again or use my right arm properly. This is a bit of a nightmare, which I’m awake for and know it’ll continue for awhile before it fades to a more manageable level.

On a happier note, I have had my owl pendents come through to make owl necklaces 🙂 my partner has bought all the pendents, beads, equipment I have and I still have more to come. I am thinking of selling them and donating a percentage to m.e and fibro charities. I try to donate how I can, giving clothes etc and although it won’t be hundreds of pounds it’ll be something to help aid their research. Also it is giving me something to focus on at the moment. I still have my left arm and half my right hand in use. Until I lose total use of both hands and arms I will continue to make bracelets and necklaces and get around the flat as best I can.

And I have the memories of the zoo achievement to make me smile. That day will make me happy forever 🙂

Coincidences

The nurse came round yesterday morning to take blood. While she was sorting through her bag she asked if she could ask what was wrong with me. So I said and she exclaimed that her Mum has Fibro but her Doctor doesn’t recognise it and she is left untreated. I said that I hear that too much, but it is now a world wide recognised serious chronic condition. We chatted about it for a bit and she asked my opinion on what to do. I advised her to change her Doctor and to a younger one if possible as they are more likely to have been taught about the condition. I said how brilliant my Doctor is and she asked what surgery I was at and which Doctor. So I told her and she said she would try to get her Mum in to see her. What a small world though, I was pleased that I could say her Mum could get the help she deserves and I truly hope she does.

I am still badly aching and paining today. After days of bad pain under my right breast, I felt and saw a very big swelling underneath. It is definetly a muscle, why it’s swollen to the size it has I have no idea. I cant twist to see if its also around my side up to my shoulder but I don’t need to, the pain is there and I am pretty positive it has swelled too. I will wake up tomorrow the Michealen Mans twin if I don’t go careful! I am not too worried about it, these things come and go. O.K not always, as with the Devils grip.. but I think it is just part of it. Or it hasn’t gone. I will continue to keep an eye on it, and will phone the Dr if it worsens. I hate phoning the Drs as you know and try to avoid it.

My partner cooked for us last night and I have to admit, he is a great cook. He made a chicken and bacon pasta ragu which was delicious, I even had seconds! It was the first meal I had for awhile again, my eating these days is all over the place. I can no longer stomach meals everyday, I now tend to eat little but often. From a couple of biscuits, to a sandwich anything that is small tasty and quick to eat. I hadn’t eaten since the previous afternoon when my partner cooked, over 24 hours without food. It is something that I do need to address, but I know that full meals daily make me sick and have found the little but often works for me at the moment. I say at the moment because like anything with chronic conditions, things can change very frequently. I take cod liver oil tablets along with my vitamin D and B. I don’t eat fish, I have never liked it but as a kid ate it mostly due to not wanting my Mum to have to cook seperate meals when she had enough to do already. But as soon as I moved out at 17, I stooped eating it and never have since. I am very aware Omega 3  is needed though so I take the suppliment and so far it has worked fine, I have no fish related illness.. yet! 😉

I made my first card yesterday afternoon, for my partner. Yes, it was a bit of a soppy one.. but I wanted him to be the first person I made one for as I do appreciate all he does for me. I can’t often do much for him, so when I can I truly want to and jump at the chance. Well, shuffle but the meanings the same :). I have always said relationships are give and take, not one sided take take. Mutual respect and partnership is important, I want to be equal with my partner not both struggling to be top dog. That wouldn’t work at all. We both know we love each other, respect each other and are equal to each other. I wouldn’t want it any other way.

It’s a beautiful morning here. The sun is already shining but it has a brisk coolness hovering about. That will disperse though and I reckon it will be a warm sunny day. I won’t be able to get out feel it, but the fact I will see how nice it is through the widows does perk me up. I do love early mornings sometimes, when the outside world starts to wake and bustle around. Early morning and late night are my favourite times of day, and I am glad I am up really early to enjoy this morning  🙂