The Struggles Continue….

 

Time for a brand new post; I know I have not written a post in a while, and for that I apologise.  The truth is that for some time now I have been struggling with my condition, and in particular the dizziness which I live.  For whatever reason. the constant dizziness has become much more severe.  I do not know whether the severe dizziness that I have been experiencing is a relapse, as the severe dizziness has happened before, or whether the dizziness is simply getting worse.

 

My reality
My reality

 

I have not been able to talk to many people regarding the sudden deterioration in symptoms; I often find it hard to talk about – when I try I just end up crying and in bits afterwards.  Perhaps I find it more difficult to talk to others, such as my family and friends as I do not want to worry them.  On top of this also, is the deterioration with the trouble with my legs; both the weakness and trembling in them have become worse.  The severe trembling and dizziness, however has recently made it very difficult when out; at both the social groups that I attend as well as the days out with my personal assistant.  These symptoms are so troublesome that the places and activities that were so easy for me, has now become much more difficult.  Yesterday, I had difficulty in getting back to the car which was parked further away from the garden centre then we usually park – it was not that much further, but because of the severe trembling in the legs, I almost didn’t make back to the car in one piece.

The wheelchair that I have is obviously a solution when my legs become so severe that they hold me back from doing what I want; but alas the dizziness makes it difficult for me to be able to stay in the chair, as I feel so dizzy even when sitting down.  What am I to do?  A lot of you reading this, may think that I am weird and not able to understand this quandary, heck even I don’t understand it – but unfortunately this is my reality; one in which I face everyday.

Everyone I know keeps suggesting that I go back to the doctors. People constantly ask me to describe the condition and what I go through everyday with it.

But how am I expected to describe something which I do not understand myself?  Even the doctors are unable to understand my condition and its symptoms recently the doctor who has been dealing with my condition and has left the practice that I am registered with and so as a result have had to find a new doctor to deal with. Whenever I do go and see the doctor, however, and report in the deterioration and severity in my symptoms I am often met with puzzlement – which obviously doesn’t inspire much confidence!

Recently, my parents booked the cruise that we have been looking at for a while, and although I am excited and very much looking forward to the holiday, this sudden deterioration in symptoms does make me worry slightly about how I will feel next year.  Will the severe dizziness still afflict me?  Will the dizziness withstand a cruise?   Only going on the cruise will i be able to determine this.  But looking at the silver lining at least it will be an experience I will never forget, and it is these memories that are priceless…

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6 thoughts on “The Struggles Continue….

  1. Actually Rhiann, you are the ONLY person I know that comes even close to having the same symptoms as me. My friends with MS can’t even comprehend CHRONIC dizziness (24/7),vertigo on top of weak failing legs (and all my other MS symptoms). I’m not saying that they don’t care, but my symptoms are unique in that my dizziness is my number one issue. The dilemma is exactly as you described. The wheelchair is helpful for the leg situation but makes us dizzier than walking. I think about you often and I hope you know I care. I’m grateful to have you as a friend from afar! You are in my prayers! ❤

    • Thank you so much for your comment Michele, it definitely know that there is someone else who understands EXACTLY what I am going through and what I am feeling. The support you have shown me means more than you can ever know.

      Rhiann x

  2. Hi Rhiann, I get constant near-fainting as a result of my autonomic dysfunction. It’s a horrid thing to have to deal with. I find it easier to deal with my CRPS pain than I do the constant dizziness. It got worse again recently and I’ve no idea why, either. I am so glad you you also still try to get out as well, it’s blummin’ hard work, I salute you! Big hugs, and I’m sooo glad you have a holiday to look forward to, xx

    • Hello Elle

      Thank you for your comments. It always helps when you know that people understands what you are writing and can relate to your writing. And thank you for your positive comments – I really appreciate it.

      Hugs back xx

  3. i always forget to look at these posts as computer tires me too.i feel your pain i am so frustrated at the minute with my lesions and ongoing disability.tx

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