Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Peace of Mind

The last several days have been very busy and very positive.  I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.

This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten  colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.

When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that  when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.

So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me.  Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.

Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.

Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.

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Comments on: "Peace of Mind" (1)

  1. I find you very brave. It is difficult and rewarding to try to act normal, even in the event of a storm. EEG has proven that I do also have epilepsy but this seems to be under quite good control. I did have a seizure this past summer when having a UTI and white cell count went sky high. Was hospitalized for few days and back to normal. “Normal”, what is that anyway? Normal is enjoying new friends who understand and don’t look crossways at you when you have a “storm”. Normal is enjoying family, grandchildren if old enough, old friends who stick with you and maintaining faith in God, a God who never fails us. Finding friends and family who never judge is a wonderfully loving feeling. We have only one judge but many forget this, even family. We have to live this life and only we can make the decisions that we feel are right for us and all concerned. With what we now have we must look forward, repent for the past and try to enjoy the few moments we have left in the future before we progress when we have generalized Dystonia especially. There is no good Dystonia.
    The excruciating pain from this Dystonia is so tiring. I sometimes sleep a whole day and wake up in the morning, not even realizing that I lost a day. Mornings sometimes kick in a feeling 100 times worse than any restless leg I ever experienced. Thus causing more time unable to walk and more time in bed…another attack.. With Christmas nearing each day counts in its entirety. Every minute counts!. Pressure of this knowledge adds more anxiety and stress which is no help to anyone. I find it difficult to manage explaining exactly what Dystonia is to my family so I DON’T tell them. I HIDE it as much as possible. They have no idea.
    I never knew exactly how deceitful my ex truly is until court. I was stunned and afraid of having a storm so I was forced to go into court in a wheelchair. You think you know and love someone; find you never did. God shows you in the end. Somehow I feel he has some strange love for me still or he would not find it necessary to be so nasty still after years. A love like we “thought” we had only happens once in a lifetime. Thank you God, for showing me the evil in his heart.
    A son-in-law actually said once to me,” So what is it that you are “supposed” to have wrong with you now?” I have never gotten over this. I try to pray for my relationship with him and while I know that he is a devout Christian, a good father and husband to my daughter, I cannot understand how a Christian man can throw stones. They feel more like ROCKS!!!! I never know what to say to him.
    No, it was not my first divorce, nor second but I had loved this man and intended to forever. I stayed much longer than I should , taking so much abusive treatment due to my thought of his children, whom I loved and my own. Police encouraged me to have him arrested. He’d could be sitting in a cell but I couldn’t do it. Love is strange. The man was physically and emotionally abusive, eventually, even strangled me before leaving. I was diagnosed in another state and now in this state, diagnosed properly…That the RSD was in the latter stages, causing — well, you know… I don’t know what happened or why suddenly, easy if you are wealthy/with like friends. He just couldn’t deal with my illness, the dystonia is too much for those unwilling to love enough. … very difficult. No one ever said marriage was easy either. My children still don’t know the actual truth. 16 … nearly 20 years. I couldn’t stand it any more. , phone calls to women, gifts for girls,. ..flowers on secretary’s day…etc. . I was encouraged by friends to date others while he was gone and getting his divorce. I tried. I wanted only him. He took such great pride in the fact that he drove me to appointments, never considering the damage caused else wise.. Then a true, intuitive friend told me that the entire marriage had been a farce. I don’t have the energy to tell my kids , frankly nor do I care much what anyone says or thinks anymore. I have trouble enough just trying to get from the bed to the potty on some days. With the Dystonia, the pain, the spasticity, the spasms. . I couldn’t take the emotional abuse, the vomitting, or other symptoms. To each his own but I could actually feel the evil in my own home and was afraid to sleep next to him. This only exaggerated my symptoms and living in a small area, the hospitals knew NOTHING about dystonia. I needed help and God placed a good, decent, Christian man that I had known for years in the right place at the right time and he took me, my poodles and what few things I had in. He said he’d take care of me when I stopped breathing( which I no longer do..thanks to medical help) We now are married. He knows so much about RSD, the horrific paIn, how the dopamine is depleted from the basal ganglia and he CARES. He has seen the screaming pain. I would love to be a member of the group. Let’s correspond through email, OK?
    I noticed the jewelry which I love making when I can. Maybe we can trade some. I mostly make earring and neclaces on days that my hands are still.
    I am relatively new to this movement disorder part of the Reflex Sympathetic Dystrophy so I do have questions. I’d be happy to share knowledge and stories with you if you don’t mind answering some , what may seem like “dumb” questions. Thanks so much. God Bless and happy holidays of all kinds..
    Jane

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