Chocolate, Flowers and smiles

I woke yesterday to a lovely sight, two Thornton chocolate figures , a chick and a rabbit, either side of a vase of tulips. I had to put up with my partner also being in the image, but you can’t win them all… 😉 I joke, I really am very lucky to have someone so thoughtful and kind and I really don’t know what I would do without him.
I am very lucky to have a family that support and help me too. I am rarely stuck having anything brought to me, prescriptions, electric top up, milk etc and I know I can pick up the ‘phone to my Mother and she will be there for a natter or rant. My Father is really good at lifting my spirits and I get my ‘getting on with it’ attitude from him. If you can’t change something then learn to adapt until such time that you can, that is very much installed in my brain. This has helped  me to adapt to being like this, well apart from the occasional rant  🙂

My rib pressure is still there, I now have a temperature too but I am constantly getting that so I have no idea if it’s related or not. The left side of my neck and shoulder have also decided to seize just to put that lil more annoyance into things. I am going to have to ‘phone the doctor tomorrow if it’s still there, the rib pressure as it’s going into my back and hips. The joy of chronic conditions eh.

The OT is coming round on Thursday and I need to tidy up the flat, but there is no way I can today. Moving is making my rib pressure worst but I can’t stand the mess my room is in. I will have to ask for help to tidy and clean it, which I do hate doing. I don’t want someone having to do that for me, hence why I refused home help as we get by well enough and I wouldn’t feel comfortable with someone I don’t know in my home. This is a personal thing, I think carers do a brilliant job and help so many people, theyre a god send in so many ways. And I expect eventually I will have to have them, but for now I will manage without.

My partners brother and his girlfriend popped in for a lil while before going to a family Easter lunch at their parents. I couldn’t go but it was nice to chat with them. I have never met his brothers girlfriend before, but she was lovely. They’re a good couple and I like them both. We are planning to do a film and take a way night soon which I’m looking forward to. I appreciated the suggestion, as I can’t go out they suggested coming here and all spending time together. It was a really thoughtful idea and I look forward to spending more time with them. Plus the local chippy is gorgeous so good company, films and a pig out on lots of food sounds perfect to me. Stuff the careful eating for that night, it’s all for a good cause after all… 😉

It’s the little things that count

I’m surprised I didn’t see a truck on me when I woke as I feel as though I have been run over by one! Every muscle is screaming at me, and my feet, hands and top of my right arm is swollen. I’m pretty sure I am going to lose the use of my right hand at some point today, the tight, spasming paining signs are there. It’s disappointing as I had three days where I wasn’t too bad, not out dancing but my body was much quieter. But that’s the thing with these darn conditions, they give you hope for a few days, a week maybe, then *bam* they reach up inside you and squeeze until your body is once again caught in it’s web of uncontrollable symptoms. I try not to get too hopeful, try to stem the thoughts of maybe this time I’ll get better but they pop into my head regardless.
It’s frustrating, annoying, hurtful, devastating, and yet it happens again and again no matter how much you understand you are now disabled and have very little chance of being who you once were. You trick yourself into believing your suffering could be over, you rejoice in the thought. Then have to pick up the peices when you crash again which becomes harder each time.
I did have a giggle yesterday evening though. My partner had bought me a pair of 5 blade kitchen scissors to help me dice lettuce etc.. and said that he had got me a surprise present too. Unfortunately he had ticked the wrong box on the order form and instead if getting me owl notepads with googly eyes, I got a 8 peice screwdriver that lights up when you use it! I laughed for ages over this :,) but I will use it when I can as it is actually really cool and useful. But so far removed from lil owl notepads as you could get! It’s the lil things that happen that brighten the day and this is still making me grin while I write now.. So it was definitely a great gift 🙂

Not so patiently waiting

Feeling quite annoyed today, which I know doesn’t solve anything or make things quicker but my patience is running low.

I finally had my confirmation letter to go to the pain clinic and see a nuerologist and they haven’t changed the appointment date but kept it for 10th June,which is  five months in total I would have been waiting for it. On top of that I have an 18 week wait to see a physio and no word as yet from the rhumetologist although that is supposed to be being fast tracked. As were the other appointments so I won’t hold my breath as I will most certainly be dead in the waiting time if I did! I’m not sure if this waiting is usual in other areas but it seems if you live in the south west of England then it is standard procedure. I am not blaming the people who work for the NHS at all, the nurses and doctors, and I know I am extremely lucky to get free treatment but I worry what kind of state I will be in before I get to go to these appointments, or if I can go at all by that time. As I’ve been told by my Doc last week I and my health are deteriorating and that has sped up this week to the point I can’t stretch my limbs at all as they lock and the pain and spasms this causes is I have to admit, awful. But how do you not stretch limbs if they are in pain, it’s a natural thing to do to relieve the pressure, but my body seems to have decided to flip around and make it 100 times worse if I do. Think of a cramp in your leg, then lock the muscle causing it to be totally stiff, add in massive heat and pain and then spasms in the rest of your leg and through the locked muscle for ten minutes to an hour and that’s what it’s like.

I also wonder how many people are suffering because of long waiting times, how many peoples conditions are so much worse because they’ve not had the treatment they need. How many people could of been saved worsening health and emotional trauma the months of waiting has caused. Do they think, oh well if we make them wait 5 months then they will probably get better and we won’t need to treat them? As if we are all in a state of hypocondria and the waiting time will put us off from pretending to be unwell. Which seeing as our doctors actually refer us to them and fully know we need their help, is total crap.

I’ve learnt so much patience over the last year, patiently waiting for symptoms to ease, situations my symptoms have created to pass,  to not get annoyed at how my once clean tidy home is no longer so, patience in waiting til the absolute last minute to take my meds or call the doctor only when I feel extremely unwell. I could practically become a saint in patience I practice these days ( well maybe that’s a bit far fetched) but this is and has annoyed me to the point I am not only ranting about it here but twitter and people too! But, I have a plan which I started today. I am ‘phoning each of the places asking if they’ve had any cancellations. When answered with the eneivitable, no, then I will polietly inform them that I will ‘phone them again at the end of the week to check again. I will continue to do this twice a week. I don’t care how unwell I am, how slurred and patchy my speech is, how much energy I am going to use up doing this I am determined to see it through. Then maybe, just maybe they will have a cancellation or get so sick of me ‘phoning them they will create one for me.. Here’s hoping 🙂