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Tuesday, December 10, 2013

I nearly had to give up crafting....Due to My Benign Essential tremor

some of you may have caught some of this on FB.........
So I had better explain hadnt I?
Okay, well some of you know I have EDS, Ehlers-Danlos Syndrome III, in most cases it is non-life threatening, except for the odd one or two of us, yeah okay I caught the life threatening part, and NO this is not a sob story, or a plea for pity!
I have EDS, a connective tissue disorder which means that my tendons ligaments, muscles and skin is too stretchy. Things arent held in place as well as normal people. I dislocate parts of me very easily, and my muscles arent always doing their proper jobs, which means that they work harder to do the wrong job, than they would if they did the right job!  I dont like taking tablets, I cut down as far as I can, I wont use morphine but I use coping and distraction mechanisms, I really dont like tablets, and I also forget to take them a lot, especially in the mornings!
Its not something I "developed", its a genetic issue, (boy did I fall on the wrong side of the scale for genetic issues!) Mum had it, Dad Has it, I got double dosage, while my brother only got one!( Wimp!)
As a result of my EDS I developed osteo arthritis at a very early age, and due to the damage to my spine by the arthritis I developed an Benign exacerbated Essential Tremor. Basically think of an engine running smoothly, thats an undamaged spinal chord, mine is like the most badly tuned engine in existence, constantly mis-firing, (causing the Bang you suddenly hear as a car goes past) and causing my nerves to Mis-fire and jerk my body randomly. It started in my legs, and I got rushed to hospital having fallen while crossing the road to get to the GP's to see him about this sudden wobbliness of my legs. Now its all over my body. I am 45.
 I take a medicine for my Tremor, and if you know someone who has a tremor then you need to make sure that they know there's a medicine for it! Believe me it makes all the difference in the world!
How do I know, well firstly I take the medicine myself and know that there is a massive difference in what I am able to do with the medicine, and secondly, I spotted a woman on the bus some years ago, who had a tremor, luckily she got off at the same stop as me, and she must have been in her early 50's, I stopped her and spoke to her and explained about the medicine, (once she got over the sheer embarrassment of being stopped for her tremor that is!) you should have seen her face light up! About half an hour later, I passed her again, and she dragged her son over to meet me, take notes, and find out more about it.
You see a Tremor is embarrassing, especially at a young age, no offence but if you are knocking on the doors of 80-90 then fair do's we expect it, but we dont expect it from people who arent that old in reality do we?
It can also affect your self esteem, I know that the poor woman was uncomfortable being on a crowded bus, being seen like that by people she didnt know, with kids and teenagers and older staring at her.
I know it affected her home life, she will have spilt things all the time, she wouldnt have been able to do a lot of things you think normal, she wouldnt have been able to apply make-up for herself, hold a book steady to read it, it would have to be on something instead of her hands.
So you might not see much of people who have a tremor, we tend to try to hide away and not let others see us, we dont really talk about it.
Now I am a crafter amongst other things. I am a mother, a Grandmother, someone people come to ask questions of, a cook, a listener. I enjoy the internet, and games, reading, crafting, going out, all the things you do however.................
Ten days ago, right before an old school friend came to stay, I had a phone call from my Pharmacist, my Tremor medication had been discontinued.
What? What does that mean?
Well they dont make it any more.
But surely theres an alternative?
Well you'll have to speak to your GP........
so 4 phone calls to the GP later, and today I found out that there is NO other alternative medication for a tremor.
I would have to use my remaining supply to wean myself of the tablets, and revert to full Tremor mode.
After several hours of sitting here, considering everything that would be lost to me without the medication, grieving for my life that was, I posted on Facebook :
To the Powers that be that USED to make Primadone: Mysoline
I would like to thank you for returning me to a state where I wont be able to have a hot drink or hot food. I would like to thank you for completely confining me to the house by making me unable to drive. I would like to thank you for making me ashamed to go out in public. I would like to thank you for making me unable to hold my hands steady enough to craft. I would like to thank you for making me unable to hold a book steady enough to read. I would like to thank you for massively increasing the wash load from spilt food and drink. I would like to thank you for destroying my LIFE!
I have EDS, as a result I have Arthritis of the Spine, which causes the nerves to mis-fire in the spinal chord. I am 45 and have an Essential Tremor due to the damage to the Spine. I do not do drugs or Alcohol. The ONLY treatment for this was Primidone, so thank you so very much Mysoline!
Please share this information, I am not asking for pity or sympathy, I dont want it, what I want is a treatment for an Essential Tremor!
The only other way to stop my Tremor is believe it or not.......Alcohol, yet I cant see the government paying for me to be an alcoholic to stop the Tremor can you? And not that I actually enjoy being drunk in all honesty!

I then sat and cried my eyes out. You see I know what its like before the tablets, I know the embarrassment of having major tremor attacks in public, even in A&E they rush you through! I know the spilling, and scalding, I know that I am unable to drive like that, that I dont want to be seen like that, its bad enough now on crutches for as long as I can bear it, before having to resort to full wheelchair status as I was informed I would be by the time I was 35, did I say I'm 45? I fight to be me every day of my life,  to maintain mobility, to maintain my independence, to continue to craft, yet to take away the medication that reduces the Tremor to a manageable level would have taken all my Soul with it.
I would be stuck inside an Pain filled un co-operating body with no Coping strategies
I gave up cake decorating, and calligraphy years ago because of the tremor, but to be unable to get the body to co-operate long enough to put a dab of glue on a piece of paper would have been the end of me.
And thats what the tablets mean to me, LIFE. Now I'm not saying that the Tremor is totally controlled by this tablet, as it isnt. I still have my moments, and triggers, and actually I look forward to a tremor Attack sometimes, as its the only time I am totally pain free! It overloads my nervous system, and blocks the pain triggers for a few hours, I might be physically exhausted by the attack, but for a couple of hours, no pain! Then I can get the painkillers in BEFORE the pain comes back again, but it is generally a result of injuring myself that triggers the attack! Slipped disk? No problem, I then promptly had a tremor attack, and overloaded the nervous system so didnt feel the pain from it for another 3 hours, sometimes it works for me instead of against me.
I was very lucky today, It turns out that Primidone IS still available. The company that made it ceased production, and passed it to another company, Audley Mackenzie, it was showing as discontinued on the SERB ordering system, and hadnt hit the Audley Mackenzie system in the meantime.
Some very kind lady on FB sent me a link where I could trace the Primidone down. I frantically started making phone calls, I bawled down the phone at this poor receptionist at Audley Mackenzie, dislocating my vocal chords in the process, (Yes thats the life threatening bit) and she gave me all the details I needed for my pharmacist to track the tablets down.
Then I phoned my phramacist, bless him at just gone 5.30 pm! He had actually ordered it that morning as he had spotted it on the system! He was sitting there waiting for them to arrive there and then! He hadnt told me about it as he wanted to make sure that a) He could get them, and b) they were the right tablet. 
For 10 days I havent crafted. I havent interacted with anyone really. Because of the worry that not having this tablet caused. I havent even spoken to FG, who I am sure is very upset with me by now, for my total silence. I didnt even post my challenge for Krafty Hands, I didnt think I would ever craft again. And I couldnt talk to anyone either, I have been hidden away since Lucy went home, on the computer trying not to think, but still thinking............... 
So if you know anyone who has a Tremor, tell them that there's a tablet that can help reduce the tremor, please, its not a cure, but it helps, massively
Thank you for reading, and hopefully some of this information will be of use to someone out there. If a member of your family has a tremor, there is a tablet that can reduce the effects, that can allow you to function more as you were in the past, but you need to speak to your GP, or Neurologist, but know that there is ONE thing out there to help, and hope it doesnt vanish!



Linny said...

Good luck Lou, so pleased you found the new meds. My DIL has a mild form of this desease and her mum has it quite bad. So know where you are coming from. hugs Linda (ex DT Kraftyhands) xxx

Shoshi said...

Isn't the Internet a wonderful thing, Lou - enabling you to find a new source of your essential medication. Really, what these manufacturers put one through, thoughtlessly withdrawing something that is a lifeline for so many - it must have been hell, knowing what the future would hold without it.

It's good to have a fighting spirit when you suffer from a chronic disabling condition. However, there seems to be a widespread view that "taking to a wheelchair" is an admission of failure. This is not the case. Starting to use a wheelchair was an absolutely liberating experience for me, enabling me to do everything on that first holiday that the rest of the family were doing, and more besides, and since then it has changed my life. Wheelchair design is also much improved these days, and a good fitting one can become an extension of oneself. I also have a mobility scooter now (my buggy) which takes me a bit further under my own steam - to the local shops etc. so I now need less help than previously.

I had a very good friend (now sadly departed) who had cerebral palsy, and increasing arthritis in his later years - and he struggled for years with crutches, valiantly resisting the wheelchair. When he finally realised that he could no longer struggle on, he said to me that he wondered why on earth he hadn't got a wheelchair years ago - he was totally transformed, and even his face looked different, with the lines of pain gone.

It's definitely worth thinking about. It's time the world realised that wheelchairs do not equal failure, or shame. They are a tool like anything else, to enable you to live your life better. Would you deprive yourself of glasses for the same reason?

I am very pleased to hear that the new supplier of meds is going to enable you to continue crafting! Essential for one's fulfilment and creativity! Keep up the good work.


Linda Simpson said...

Hi Lou, I saw your post the other day on Facebook and meant to reply to it but it flippin disappeared and I couldn't find it! So sorry to hear that you had this happen and very glad to hear that there is medication for you to take for your tremor.

Take care
Linda xxxx

Su said...

I'm so glad there's still a supply of what you need out there Lou! Long may it last and well done to your pharmacist for spotting it too, and getting a supply soon as poss. I can only imagine how you felt until you found out about the new supplier.

Take care and wishing you and your loved ones a happy, peaceful and prosperous 2014.

Hugs Soop xxx