Thursday, 25 February 2016

How Are You Feeling?

When I first got sick eight weeks ago, I was asked by friends and family on a daily basis
"How are you today, are you feeling any better?"
It was nice that people cared and I often replied something vague but positive.

"I'm not feeling as bad as I was, thanks for asking" 
Lately, not many people ask. Well, it's been eight weeks, surely I must be better by now?

When I was in hospital and told what was wrong with I googled it as soon as I could. Lying on my back with only one arm working and on my mobile which was deciding to give up on me, one week before the end of my contract.

Transverse Myelitis

Transverse meaning the direction, in this case across the spine.
Myelitis meaning the effect on the myelin which is is the coating of the spinal cord.

My nerves are damaged. 

I carried on to read that recovery could be two to eight weeks. I was horrified, how could I be like this for two weeks let alone eight.
I later learnt that recovery could be up to years, and maybe never at all. Patients fall into three categories, some recover, some recover partially, some don't recover at all.

It's rare, so rare that there really are no positive answers. I've spoken with other people with the condition in the  UK and USA. Stories are all different. Those that say they have recovered completely always have a 'but.'

"I'm completely recovered and back at work, I can drive, run and ride a bicycle...but if I get a water infection/cold/stomach bug all my TM symptoms come back."
It's scary for someone with Transverse Myelitis.

So, how am I at eight weeks post attack?

It's hard to explain. I try to think of how I've improved, or got better and I can't.
I was worse in the beginning, or at least I though I was.
If I'm truly honest, I think I've just got used to the symptoms.

I'm used to not being able to fall asleep at night. I increased my medication twice to help me sleep but it's not working again and I don't want to be dependent on drugs for sleep.

I'm used to waking up in pain. I don't lie there not wanting to get out of bed anymore, I grab my painkillers and just get on with it.

I'm used to taking forever to get dressed/shower/take care of myself. It's not got any quicker but at least I'm doing it myself.

I'm used to walking with my frame or crutches, I know I can take a few steps without them too. I can do it, but it still hurts, it still takes more concentration to move my limbs than it did before. My feet still feel strange and I can't feel the floor properly. My hips don't feel like they are part of my body and refuse to work with me.

I'm used to the pins and needles and I never thought I'd say that.

I'm used to the banding, when my skin feels like it's trying to strangle me, or like I'm wrapped in a huge snake getting tighter and tighter.

I'm used to the pain in my back, my legs, my feet. I take my painkillers but nothing seems to take it away.

Am I getting better?
No, I don't think I am, I'm just getting used to being ill.

Also, I have new symptoms. I get neuralgia in my face, sometimes so bad I'd say it was worse than a migraine.
My ankles have disappeared and been replaced with cankles and I've only ever had them before while heavily pregnant.
My skin is dry like sandpaper no matter how much I moisturise it. My legs peel like they are sunburnt.

Tomorrow I begin neuro physio therapy. I really hope that I will be able to find my body again because this one doesn't feel like me. I have big hopes because hope is all I have.

I want to be able to walk without any aids, I want to be able to go outside by myself, I want to be able to drive again.

I want to be able to have my kids sit on my lap again.

But most of all, I want to be me again.

34 comments:

  1. Sending big hugs...It sounds awful for you. I hope things get better and easier soon. I hope the neuro physio therapy helps. Good luck x

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  2. I really hope you get help from the neuro physio therapist. Sending you lots of love x

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    1. Thanks Angela, I'm hoping my therapy works x

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  3. Oh no, that sounds so awful I really hope things improve for you soon.

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  4. I really feel for you Anne. You come across as such an upbeat and positive lady despite your suffering. You are amazing to keep going with such positivity. I pray things get easier for you and that you get some recovery soon. Xx

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    1. Thank you Tracey and thanks for commenting on my FB page x

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  5. I really hope things improve soon Anne and that the nuero physio therapist can help you x x

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    1. Thank you, I will do all I can to get better x

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  6. Oh no, I really hope this eases and gets better very soon. Nothing worse that being ill.

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    1. There really isn't! Thanks for your kind thoughts.

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  7. Oh geez, you must be so fucked off. I cannot imagine how hard each day is for you and others who have to deal with constant pain and discomfort. I had a couple of months with it when my back went and I hated being constantly uncomfortable. I have no words of wisdom just a big hug and I really hop your'hopes' are realised xxx

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    1. This is one crazy disease, thankfully it's really rare, I like to think of myself as one in a million because that's the chances of catching it in the Uk! Thanks for the hug x

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  8. Sending big hugs, it must be so frustrating for you. My friend has back problems and they have told her there is nothing they can do - she is devastated! Hope that they manage to help you with the neuro therapy

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    1. Oh your poor friend. I too have a friend with back pain and if her back doesn't hurt she gets a migraine, our nerves have a lot to answer for!

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  9. I can not imagine feeling like this, but I understand that feeling of getting used to the,. I hope that neuro physio therapy helps

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    1. Thanks Jen, we do tend to just get on with things no matter how they hurt us don't we. x

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  10. I've been neglecting social media lately moving house and working on other projects so didn't know what happened. Sounds like a tough, long road. Just to say thinking of you and hope things improve day-by-day. Hang in there x

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    1. I did wonder where you'd gone. Welcome back and thanks for your thoughts x

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  11. so sorry to hear things are so tough for you. Really hoping that things improve and praying for a full recovery however long it takes. Stay strong - thinking of you xxx

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  12. I am sorry things haven't improved. I have friends who live with chronic pain and I know that it is no walk in the park. I hope your family and friends will pull in and help you through this difficult period in your life.xx

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    1. Thank you Oana, everyone is being really good to me xx

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  13. Gosh, so very scary. I had Bells palsy a decade a year ago and from that paralysis came neuralgia, so I literally feel your pain. I'll be praying for you. Mich x

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    1. Oh Michelle I'm sorry to hear that, thanks for your prayers xx

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  14. I hope neuro physio therapy helps Anne. It would be lovely to see you out and about again. It must be so frustrating. x

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    1. Thank you Erica, I hope I can get out again too, I really don't like being in a wheelchair, it's so not me. Plus I will miss out on so much not being able to get out by myself. At the moment I'm just focusing on improving my walking and keeping my hope. xx

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  15. This is a big affliction - I know, as I was once in a long-term relationship with a TM sufferer. They recovered enough to be able to work and lead a 'normal' life, with relatively few symptoms. Look after yourself, sending lots of positive thoughts.

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    1. That's good to hear Nell. I am in touch with a lot of other sufferers, well to be honest there's not that many of them, but it's always good to speak to those who know exactly what it feels like. A few of them have made really good recoveries so I hold a lot of hope. x

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  16. I'm so sorry you are going through this and I really hope you improve and fully recover very soon x

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  17. Oh gosh Anne, sending huge hugs your way. I do hope the physio helps, I'm sure it will although I presume it won't be an easy journey. I think you're right, as people we do adjust don't we - it's good though, it makes us fight I think too x

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  18. Oh hunny I am so sorry to hear this. I have never heard of this. Must have been a shock and scary to find out for you. I really hope you get better news that it's the first and not the latter of them and recover soon babes. Thanks for linking up to Share With Me and the continual support. #sharewithme

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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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