Transverse Myelitis & Me, With A New Addition!

Today has been one of those days that you wish You could start all over again. 

I didn’t sleep well due to my usual washing machine thoughts plus really bad pains in my right arm, that had me calling out for pain relief at 5am. I’ve not had to ask for pain relief in the night for a while now but it became unbearable so suddenly I didn’t know what to do with myself.  

My spin cycle of a brain had already kept me awake until 2am so I was pretty frustrated and upset that the pain had gotten the better of me and I just felt so flat.

My emotional side has had my thoughts running riot the past few days and I think it was down to two specific things

• The daily challenge with the rotunda
• My Goal Planning Meeting/ Discharge Planning

The on going battle with the rotunda is really getting to me and I feel useless and pathetic when I think about how a simple piece of equipment is ruling my emotions and state of mind. It’s a piece of metal that turns round. That is all. A simple piece of equipment That I stand on and hold on to while someone turns me 90° so I can sit in my chair or on the bed

 I just can’t get my head around it and if I don’t get my head around it pretty sharpish I run the major risk that I might not be able to go home. 

I want nothing more than to go home and be with the boys, hubby and fluff monster,  so I know I have to tackle this fear head on and win to be successful. It’s been agreed that I can focus on using it when I’m at my most alert then I can build up my confidence and start using it when I am exhausted. I need to know I can do it safely at all times of day before I go home as I will have carers helping me with my transfers and I dont want to be putting anyone at risk. 

I’ve had one of my rotundas from him brought in and to be fair it seems much sturdier although it does seem to require a lot more effort from the carers point of view. 

I did however manage to use it 3x today without such an horrendous urge to want to be sick or pass out. It really does seem pathetic being so terrified of a piece of metal!

The next issue that had me restless and anxious was the thought of my Goal Planning Meeting that was held yesterday.

I’m not sure if I’ve mentioned what a Goal Planning Meeting is before so bear with me.

GPMs are held every few weeks for each and every patient with the some aim of setting realistic targets whilst working towards a major goal. Normally these will be attended by 

• The patient
• Patients relative/representative 
• Key worker
• Physio
• OT 
• Social Worker
• Neuropsychologist
• Neurorehabilitation consultant
• Specialist Registrar
• And any other relevant party.

 Now my most recent meeting yesterday was attended by myself, Physio team leader,OT, Social Worker, Neuropsychologist, Neurorehabilitation consultant and Specialist Registrar.

Sadly Paul couldn’t attend and my key worker was held up for the duration.

The primary aim of this GPM actually turned into a discharge planning session, which I wasn’t really expecting. 

The physio lead the meeting and started off by talking about how I felt things were going and talked about any concerns I had  (yes the damn rotunda was mentioned!) 

I made it clear that I wanted to keep practising with my pivot transfers and they give me a little bit of independance unlike the devil machine and having to rely on others to help me. This was fully supported although the importance of using the rotunda was reiterated and I accepted that, with the right people, I will continue to practice it and try and conquer these all consuming fears.

Next was dicussed what level of support I am going to need once I get home. One thing I am adamant about is that under no circumstances is Paul to be counted as one of my carers. I know I married him ‘ in sickness and in health’ but I do not want to blur the lines between relationship and caring. 
The SW said that 6 wks of care has already been allocated and will start from my arrival home. These will be 4 x 1hr viistsat mutually convenient times and when i will most likely need it. This in its self has been a huge hurdle tooverome emotionally as4 months ago I was fully able to care for myself and having to let go of such a personal level of independance has been the cause of many tears. 

It sounds completely ridiculous to sort about such a trivial thing but I have lost so much of my hard fought independance and I’m honestly struggling to my go. 

The neuropsychologist then gave her input to the meeting and explained how , despite not having known me all that long, that she had encouraged me to start writing down my thoughts in an effort to curb my ‘spin cycle’ moments at night and try and get rid of some of my pressures on to paper. She was pleased to know I had restated writing in her and was hopeful that I’d find it easier to switch off at night.

The doctors brought up how I’d had a previous goal of attempting to reduce down my extra doses of oramorph but had been unsuccessful due to a number of factors, the main being my pain levels post therapy. It was agreed that I had enough going on already without having to try and reduce that as well and we decided I could try again in a few months. 

I did say to everyone that I was finding the change in my condition quote emotionally draining and hard to accept. Having to face the reality that I’ll never walk again and be dependant on others for the rest of my life is really difficult to get my head round and I need time to process it all.

One of my main worries is that my eldest son my feel compelled to help me all the time and it’s not something I like the thought of. He is already a young carer to his little brother and no matter how hard we’ve tried to protect him and give him the childhood he deserves, he has still ended up being a carer. It terrified me that I may have to rely on him when there is no-one else free to help and I don’t know how to stop it from happening. He is a very knowledgeable 11 nearly 12hr old and has done so much more than most adults would hve to deal with in a lifetime. I guess only time will tell just how much he’ll need to do to help but i know i must do my best to minimise what he will do.

The meeting ended with a discharge date being set. I don’t want to put what it is here as i am cautious that anything could happen in the mean time to change it and I don’t want to get peoples hopes up. 

So it’s onwards I go into the continuing battle with ‘It!’ I will succeed, I have no choice but I’m used to fighting battles and this one is no different.

Time for bed now and hopefully a decent sleep as I have a 09:00 physio session thag I’ll need to be awake for! Oh joy!!

TTFN