Letting go...Quality of life and RLS Personal Statement

[claradragon]

This is the personal statement I submitted to becat for the convention in november. I hope that by reading this it will encourage at least one person to take the plunge and do the same.

Quality of life and RLS

This is hard for me to do, to face up to my past and understand the path that I have let RLS, alcohol abuse and drug abuse steer me.

Since finding out about RLS I have spent much of my time thinking about my past and how this illness has affected me from an early age.Childhood memories have flooded back to me...things I have blanked out of my mind because of years of drug and alcohol abuse.

It starts from early memories of struggling to get out of my 'buggy' as a toddler because I just had to get out of it and move. Then there are countless times I got into trouble at school for not sitting still and for fidgeting even though I tried explaining it was because my legs felt funny and hurt if I didn't move them, my teachers used to tell me not to be so silly and there was no such thing as 'can't' sit still and it was just that I was deliberatly disturbing the class to get attention...NO I WASN'T I JUST COULD NOT SIT STILL BECAUSE MY LEGS FELT FUNNY AND HURT IF I DIDN'T MOVE THEM!!! I was classed as hyperactive and dismissed as a problem child.

I became isolated and introverted, I spent hours immersed in books to find an escape but could only read if I was lying flat on my front on my bed with my legs bouncing alternatively, the vibrations were enough to soothe my arms too. Even going to the doctor was no help, he told me and my mother it was growing pains and was then labelled as a hypercondriac, malingerer and attention seeker because everybody thought I was just putting it on...even night after night when I had spent hours in agony I still could not get my parents to believe me, they would tell me it's just my dreams and to back to bed and stop being so silly!!! You can't begin to imagine how that damages a childs mind to have no-one believe you (if nobody believed me then it didn't matter what I did) ...but then I found a way of shutting it all out...teachers, doctors, parents, siblings, friends, school, everyone and everything...alcohol! Thirteen years old and turning to alcohol to find escape from this joke called life. I believed I had nowhere to turn to but the bottle, I became more and more introverted and unable to 'grow' emotionally and as I became an adult this did not change.

It was so much easier for me to sink into the numbness alcohol brings than it was to face my responsibilities. I did not know how to be an adult as all the ones I had experienced were shut out of my mind except for the memories that haunted me, the feelings of rejection and that I was just tolerated by the people around me.By my own failings as an adult I lost my daughter and in turn my family.

The abuse spiralled into drug abuse...after years of mild dabbling I started to take speed (amphetamines) first at just weekends, then I started using it for work. I would take enough to get me through...a little bit everyday...but then I had to take 'downers' to sleep. This continued for three years, it covered up my symptoms and it allowed me to convince myself that it all really was in my head.

Then I met my last partner, stopped the speed and stopped drinking and boy did it come flooding back! For months I tried to just get along but by now my marijuana intake was rapidly increasing, hopelessness had taken a grip of me and I felt absolutly worthless. I had lost all my friends by this time as I was unable to maintain friendships and the sense of lonliness became almost encompassing.

I kept trying to find excuses for how I behaved but it all seemed so lame and so ended up either trying to cover up or never saying anything. All the time aware of my symptoms but never making any sense of them. I have been tested and prodded and poked and yet nothing ever showed up. I was beginning to really believe it was all in my head and I was actually going insane. My doctor now started to treat me for depression, but by now the feelings of paranoia had taken a grip, combined with excessive dope use and hormonal cycles I would find my head in the darkest of places as I struggled to keep a grip on reality.

So I stopped the anti-depressants. I was fighting a battle with my head, I couldn't understand why there were times when I would seem perfectly normal and healthy as though there was nothing wrong. Believe me it confused those around me as well! And then a few days later I would be back to a weak and feeble creature. Meanwhile through all this my relationship with my partner was beginning to deteriorate, with each test that came back negative or normal she became more convinced it was in my head and I needed to get a grip and I so badly wanted to but everytime I tried my symptoms would dominate me. I knew that this was not normal and this had to stop!!!

By this time I had become aware that RLS exists but didn't know anything about it and I still hadn't made the connection with all my symptoms...I thought well that explains the funny feelings in my legs but what about my arms and body? What about the pain? What about the sensitiveness? Why can't I sleep? Why don't my legs work properly when I get up sometimes? Why am I so exhausted? It wasn't until I had access to the internet, the information and the support groups on it that I started to understand what had been happenning to me all my life. Finally I found my answers that I had searched for in all the wrong places. But it was too late for my relationship.

I'm now in the first stages of drug therapy and awaiting an appointment with the neurologist and for the first time in my life I feel I can begin to move forward and build a life. A sense of calm has come to me from knowing it really is not in my head that it is really happenning. I had no idea how much pain I'd actually been living in until a hefty cocktail of gabapentin, temazepam and codeine for a few nights allowed some much needed sleep and pain relief. My dope intake has decreased as I now understand how to use it to help me and not to abuse it to numb me, in time I plan to stop smoking altogether and the dope will go too.

RLS has had a devastating effect on my life and the quality of it, not only physically but emotionally. I know that my life is never going to be perfect and I have a long way to go but I know at least I can have a life now.


Claradragon

p.s. Huge thanks to jumpy!

[becat]

OOO CLara,
I'm crying again. God Bless you our English Darling.

[Sole]

Clara,

I said it to you privately but I'll say it here too. You are so brave for exposing yourself this way. For facing your past with such clarity and strength. For continuing to choose to keep breathing, through the most horrific of times. I am so proud of you. You are an inspiration and I'm honored to know you.

Much love.

[jan3213]

Clara

I want to express in public what I said to you privately!!! I am so honored to be considered as your friend and I cannot find the words to express how brave and wonderful I think you are to share your story with the rest of us. Clara, you don't know how much it will help other people (as I said in my private email to you). What a selfless thing to do. As Sole said, you are truly an inspiration to everyone--no matter how bad things may appear, there is truly light at the end of the tunnel if you choose to see it. Clara, we have seen each other grow, in different ways. I can't believe I almost let the opportunity of meeting such a great person pass me by!! I told you once that you may be our next expert on RLS, and I believe that may be true!! I believe that YOU can do anything you set your mind and heart to!! God bless you!!!

Love from your friend across the pond!

Jan