Sunday, 24 April 2016

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.





And then the fun began...

6 comments:

  1. Ask yourself how someone who has lost all of that could ever be expected to carry on without getting depressed. You can't. You have a lot to grieve for and this is part of that. You will come through it and you will become you again, because you have shown you have the strength and determination to carry on. Ride through this, feel sorry for yourself and indulge in a little anger, you are allowed. Don't ever lose sight of the smiles and remember that you have already proven you are stronger than you think you are xx

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  2. Oh my goodness! So sorry to read that. That's an awful lot to lose and to lose it all suddenly like that must be worse than losing it gradually. You have every right to feel angry and depressed and to hate what has happened to you. I really hope you regain some of your mobility. X

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  3. Anne you are amazingly strong, even though I'm sure you don't feel like it at times. I can't believe all you've been through; life most definitely is not fair. I hope you do ask for support in as many ways as you can - no-one will be surprised that you need it. Sending huge smiles and hoping we can meet again soon as although you may not think so, you are definitely inspirational xx

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  4. Life has thrown a mega curve ball but you are amazing.. And know it's not the end of the game by a long shot. Sending virtual hugs because even the strongest of us need and deserve support xxx

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  5. I didn't know about TM before but reading about it here, all I can say is that you ARE amazing. I think it's totally natural for you to cry over reading those things - you're still grieving and adjusting to your new normal (whatever that will ultimately be) and it would be the same for anyone else who'd just had a different type of loss - say losing a loved one and then reading about the stages of grief or a news report about a missing person.

    Good luck to you, and be patient with yourself. I actually just wrote on my blog about the importance of being kind to yourself and giving yourself time to heal after you go through something traumatic. It just can't happen right away.

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  6. Wow Anne. Some pretty devastating things to adapt to. I have a friend who was diagnosed with a form of osteo-arthritis when she was about 21 and I know she has lived a very different life from the one she imagined and takes a cocktail of drugs every day to ease the pain (along with an elbow replacement a couple of years ago - she's 43 now). I can't speak for her but I think it's safe to say that you are going through the grieving process for sure. I really send every positive and hopeful thought your way that you will be one of the ones who makes a full or even nearly full recovery and you can look back on the dark days and file them away. For the time being, look after yourself and let others take some of the strain for you. X #thetruthabout

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It is so nice of you to stop by my blog, I would love for you to leave a comment too. I will reply to as many as I can and if you are a blogger you can expect a return visit from me. Many thanks, Anne xx

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