Sixteen Weeks – hitting a low point.

Sixteen weeks ago my life changed dramatically.
Sixteen weeks ago I was in hospital unable to move, not knowing what was happening to me and feeling so afraid.

Time seems to have passed quickly which feels strange because I thought that time would go slower while I waited and waited for some sort of change. Sixteen weeks ago it felt like eight weeks would be a lifetime of waiting. I’d read somewhere that recovery could take two to eight weeks and felt horrified that it would take so long. Of course now I realise that is just initial recovery, basically to regain some sort of feeling and movement. Yes, I could move by two weeks and was sent home. I still couldn’t walk without help though.

Yesterday I read a document called ‘Health Condition Insight Report Into Transverse Myelitis’ written by the Transverse Myelitis Society.

“There is no set pattern to the recovery process from TM; it is uncertain and the prognosis is unpredictable. Everyone recovers differently and at different rates. Some people who get TM make a full or nearly full recovery with a few residual symptoms. Others make a partial recovery and may have mobility issues. Other make no recovery and have to use a wheelchair for part or all of the time. They can also experience on-going residual symptoms that can be debilitating such as fatigue, chronic neuropathic pain, bowel/bladder dysfunction, spasticity, and/or depression.  There is currently no cure for TM. ” 

The document reduced me to tears.
It was so difficult seeing it all written down like that, in words that I can never seem to find. This document was describing me, my life, what I have to deal with. And I’d not thought about it this way. It hit me like a ton of bricks. How could that be me?

“People living with TM often struggle with balance. In the kitchen some people may have a perching stool, however this does not help with tasks such as lifting food out of an oven or carrying full/heavy pans they may also struggle reaching for things out of low or high cupboards. For the people left in a wheelchair cooking can be difficult because appliances may have been installed and built for everyone else in the house or there may not be enough room for suitable adaptations. People with TM who have lost core strength may not be able to sit for long periods without pain and so cannot use perching stools, as these chairs do not offer enough support for the back and sides and the seat may not be large enough. People with TM often struggle carrying drinks due to balance as they can become ‘wobbly’. People with TM often use a shower chair because they cannot stand and balance for long. They may also need someone to watch over them to ensure they do not slip and to wash feet/hair.”  

I can no longer take my children to school or pick them up.
I can no longer cook a meal without help.
I can no longer pop to the shops if I’ve run out of something.
I can no longer put on my own shoes.
I can no longer reach the top shelf of my kitchen cupboards, I used to jump on a chair to do so.
I can no longer bend down into my bottom cupboards.
I can no longer get into the shower by myself.
I can no longer stand in the shower.
I can no longer drive.
I can no longer walk, skip, hop, jump, run, bounce, dance.
I can no longer kneel.

I could go on but some things I’d rather not talk about in public.

Then there is the pain. It’s hard to describe.

“Neuropathic pain is different from nociceptive pain. It results from the injury to the spinal cord and comes from problems with signals from the nerves. Neuropathic pain is often associated with abnormal sensations such as a stabbing, pins and needles, buzzing, numbness, itching, burning, coldness or heaviness. Neuropathic pain can also be caused by non-painful stimuli such as hot and cold water, when a person is touched by someone or even wearing clothes.”

The pain is constant. It’s with me always, every minute of every day. I believed that the pain relief I was taking was not doing anything for me so I stopped taking it for a day. I discovered that it was helping and will not try anything like that again.

I have more to look forward to, I’m already seeing cracks in those around me as they try to deal with the changes that have happened. I say, I’m coping well, I’m strong, I can do this. Then I cry myself to sleep at night. I insist that I’m not depressed, then I cry reading a document about my symptoms.

“Due to the often sudden and debilitating nature of TM, many people suffer feelings of isolation and loss of self-esteem as they and their families/friends haven’t had a chance to prepare for the challenges that now present themselves. People with TM may get depression and anxiety, as activities that were once taken for granted as “normal” – daily activities of washing, cleaning and cooking as well as social activities – now need planning and adjustments. Often the planning itself brings on fatigue which means the activity cannot then be completed. For some people living with TM, a social activity or journey may require them to rest for several days in advance of and afterwards.
People with TM may also have emotional issues, as they find it frustrating to not be able to physically do things that their minds think they should be able to do. The person with TM has to put themselves in a lot of “try it and see” situations, and it can be demoralising each time they find something else that they can’t do. The nature of friendships changes too, with the friend either having to play the role of a carer when with the person with TM or with a separate carer being involved in personal relationships to support the person with TM. Sometimes trying to cope with everything can feel very overwhelming.”  

At this moment in time I hate Transverse Myelitis.

I will not let the hate consume me, I will let it make me strong. I will fight it all the way and show it that it won’t control me.

But first I need a little nap.