Turd Cake

I will be honest very little about my health gets me down. Well not strictly true, the migraine situation ( up to three a week) was pretty trying but thankfully that has settled, plus when I have a CSF leak flare up of symptoms but that is more of a freak out along the lines of what if it doesn’t heal and I have to spend the rest of my life in bed ? I don’t know if I can do it. The injuries from the road traffic incident are really messing with my mood at the moment and I feel a bit of a flake due to it. I put up with a lot of shit that seems to be continually thrown my way but I am struggling to deal with the constant pins and needles in my left arm / hand along with the burning pain that comes with it. Topped off with a numb left buttock which is the icing on top of the turd cake, I am struggling.

I spent last week feeling really tearful, the physiotherapy session from the week before had done nothing but make everything hurt more. Six weeks after the accident and instead of things improving things are getting worse. The pain is like electric shocks, you never know what movement will prompt the sharp zing of pain radiating either from my neck or my upper back. My left shoulder is grating in the socket. I have had enough, it is as simple as that. The only time I am free from the pins/ needles / burning / numbness is when I am asleep and even then I am being frequently woken up by the pain in my neck. And just when you think things couldn’t get worse they do.

On Saturday I had a video call with a private Doctor for an assessment of my injuries following the car accident back in August. I had all my notes written out, a list of my prescription medication printed out, I was all prepared for the “meeting” which I was anticipating to last around 30 mins to an hour. So you can imagine my frustration when I was rushed off the phone in 8 minutes and 22 seconds. I was told that my injuries would take months to heal and that he would organise 8 sessions of physio therapy. Basically as soon as he found out I didn’t work, it didn’t matter how my injuries were impacting me. I was sat dumbfounded in shock afterwards trying to work out what had just happened. Every time I went to speak I was talked over. He was completely clueless about EDS, so when I say my range of motion is reduced, it doesn’t look like it as it has just reduced to a non EDS persons range of motion. You need the input of someone who knows me and has been treating me for years. Yet my whole case could be settled on the basis of this arsehole doctor. I cried. I cried because I felt like I hadn’t been heard, I cried because I felt like I hadn’t been believed and I cried because yet again I was going to have to fight another battle for a situation that hadn’t been caused by me but some stupid twat driving a BT open reach Van and him not paying due care and attention.

I was shocked at how low I was and how easily the tears came. I am not one that dissolves into tears over stuff that is to do with me. I will cry at tv shows etc but I am not one to sit and sob about my life. I made that decision a long time ago and felt that it would be a waste of time and energy. But Saturday I just didn’t care. It was just another punch in the gut.

I’m afraid to say I just wallowed a bit Saturday morning. I wrote a very strongly worded email to my solicitor pointing out all the issues i had with my 8 minute and 22 second health appraisal. I really wouldn’t mind but that doctor will be being payed hundreds to churn out these assessments over video calls and it appears there is no quality control at all with them. I then was angry, angry that as soon as he realised I was disabled and not part of the work force that my life was some how worth less than other peoples. WTAF??? 

So after Jay had popped home for lunch and I had a bit of a vent to him I decided that I needed to push myself and do something on my embroidery machine. I hadn’t touched it all week as I had been feeling like everything I do is shit, I couldn’t concentrate and sitting at the machine isn’t very comfortable even with extra pain meds, special cushions and hot water bottles. I set myself the target of completing one piece. Within 15 minutes I was feeling much more relaxed and was actually enjoying what I was doing. I ensured I had lots of breaks and pottered about on the long stitch outs. I actually managed to get two blocks done and it was such a mental boost for me. It really cheered me up after spending the last 4 days on the sofa feeling sorry for myself. 

By sitting at the embroidery machine and forcing myself ( it felt like pulling teeth initially) to be creative, I proved to myself that I was good at something and that my life even with this constant nerve pain, was worth something despite the way the doctor had made me feel earlier on that day. I was in pain when I finished, it wasn’t easy but I did feel like I had accomplished something. Something other than wasting the afternoon feeling sorry for myself. 


For me being able to be creative is better than any drug, it lifts my heart and fills me with joy. It makes me feel good about myself. So on Sunday I spent some more time at my embroidery machine not because I was forcing myself to but for the first time in ages I wanted to.

These are for some gifts that I am making. Hence why I have started Christmas projects now as everything is taking me such a long time to do as it has to be done at a much slower pace than normal. I have even managed to get some blocks of my spells and potions quilt for Halloween started.

I am lucky that I am a) able to do these pursuits and b) can afford do them. I count my blessings every day but that doesn’t mean that everything is wonderful in my life. It just means I have a distraction from the constant nerve pain. Nerve pain which is the icing on the Turd Cake I am currently dealing with.

Short and Sweet

I am keeping things short and sweet this week as I am really feeling quite rotten at the moment. I

 
The good news is I managed to go from Wednesday last week until Monday this week without a migraine. The sumatriptan worked well and halted it. I did ensure I rested for several hours rather than power through as I had done the week before as that seemed to bring the migraine back after two hours. Despite the pain of the migraine being removed I was left with a bad headache and feeling exhausted. I have noticed as well that I am getting a lot of gastrointestinal symptoms when I am having migraines and they can hang around for  a few days following the migraine. It is like a mixture of IBS and adhesion pain all rolled into one. I ended up missing dog training on Tuesday as I had been utterly wiped out by the migraine and my abdomen was incredibly painful. I  was running on empty and I just couldn’t put a brave face on and pretend that I was ok. When I felt like I was going to hurl or have the shits at a moments notice, especially as there are no toilets at the dog training centre.
 
I am gutted that I missed the training session, thankfully the lady that runs it along with her husband very kindly sent me lots of videos via Facebook chat ( used to be messages ). Which made up for not seeing what they were doing. They had a brilliant training session and I am so very proud of them both.
 
Today ( Wednesday ) I have woken up with the same IBS issue and waves of nausea again. I also have vertigo which is just fucking super! Like I needed anything else added into the mix. It couldn’t have happened on a worse day as I had an electrician here for 90 minutes to fit an outside electrical socket as we are getting a hot tub this week ( fingers crossed ). The hot tub has been purchased as a) we have wanted one for around 17 years and b) I need it in the ongoing battle to relieve the terrible muscle spasms I have. We got rid of our bath over ten years ago and I miss it. Not enough to get another one put in, although the thought has crossed my mind more than once! I found it difficult to climb over the side of the bath without assistance  when having a shower. I wish that our bathroom was big enough to have a separate bath and shower but hey ho it isn’t. So I am hoping the hot tub will help when I have awful muscle spasms and nothing else will help. It will only be up during the summer months ( that’s the plan for the moment but that may change).
 
I had to get up at 5am this morning to ensure I had enough time to sort myself out without killing myself. It has now just gone 11am and I am fighting the strong urge to crawl back to bed. Dembe is on the sofa beside me snoring his head off. He decided that he must guard his mum when the electrician was here, so all his bum hair went up and he was a bit barky! Im quite jealous of the fact that he is asleep!


 
 Due to the fact I am feeling so awful, as I said in the title of this piece I am going to keep it short and sweet.