Keep on Hoping, Keep on Wishing but Most of all Keep on Believing

Last week I went to A&E because I really thought there was something wrong with  my heart. It felt like someone was sitting on my chest, crushing me and making it hard for me to breathe. I called my GP but I was told to go straight to A&E. I was given a red card on entry which meant I was seen straight away. They put me on a ECG monitor and checked me over. Then I was to wait to see a Doctor. As I was waiting over two hours I figured that they’d worked out that I was not having a heart attack.

I saw the Doctor and after lots of questions and further examination, and a consult with someone higher up the decision was that my pain was due to my condition, Stiff Person Syndrome. There was nothing they could do for me and I had to see my consultant for treatment. They couldn’t contact my consultant so that’s up to me, but I have an appointment in two weeks so I’m not sure they will see me any sooner.

For now I just have to deal with it an accept that this pain is yet another one I am going to have to get used to.

I also have been getting pain in my arms and hands, getting dressed has been really awkward. Again, I’ve been told it’s due to my SPS which is progressing. I was affected from my waist down, now it’s from my neck down. No, from my head down because I also get triginemal neuralgia which is another symptom of SPS and affects my face.

My first reaction to the news was to panic. I sobbed. I don’t want it to progress so soon, I knew it would eventually but it’s not even been two years yet. A lot of people with my condition (which is not a lot really because it’s so rare) have died within three years. The positive side to this news (for me anyway) was that they were not diagnosed in time and did not receive the right treatment. I’m extremely lucky to have been diagnosed so quick, and there are treatments available, so I’m still hopeful. What I am worried about it my consultants lack of concern, he didn’t even follow up to see how my last treatment (in June) went. I’m going to have to be firm with him when I see him next. I can no longer wait six months between appointments, if he’s too busy to fit me in then I will see someone else.

So after my self pity, (I really don’t want to lose my hands and arms, if my legs don’t want to get better I’ll deal with that but I can’t lose my upper limbs, I just can’t) I’ve decided that I’m going to bring out my fighting spirit. I’ve researched all the treatments that might work and I want to try them until I find one that does work. Of course, I would have to get the rarest form of an extremely rare condition, which means my consultant will have fight for the treatments, but I’m determined not to give in.

I also need to be pro-active. I have let my diet slip again and I do get lazy. Activity causes me pain, but if it’s the only way to keep my body doing what I want it to do then I need to be more active. I will walk more, I’m thinking of getting some of those comfortable crutches that support the arm so they don’t feel all the stress of holding me up. I have a friend who is great with alternative medication and although she’s been having a rough time this year with her own issues, I think she’s ready to start advising me again now. I am also in contact with other sufferers which helps a lot.

Sometimes I think that, you, my readers, get fed up of me harping on about my condition. But, this is my place and sometimes I just need to share. It makes me feel better, writing things down can be so cathartic and sharing my story may help someone else in the future. I know that reading another sufferers story as helped me, she’s into her 16th year and it’s been really rough for her, but now she has found the right treatment that works for her and is enjoying life again.

Just a couple of weeks ago my wish would have been to walk again. Now, that’s just a dream, a bonus. My wish now is that I can stop this condition from continuing it’s progression.

One thing is for sure, I won’t give up. I haven’t tried half the treatments that are available yet, and as much as I despise the thought of being on medication for the rest of my life, if it gives me more life then I will take it. I have children who need me. My husband needs me. And I don’t want them to be my carers I want to be the best I can and the only way to do that is to fight this illness and not let it get the better of me. It won’t win, I will! 
School Runs and Shopping Trolleys

Debs Random Writings


Photo by crabtree on Unsplash
Photo by Alex Cagwin on Unsplash

13 Comments

  1. September 11, 2017 / 9:24 am

    Super inspiring. I hope you find something that works for you. #TheMMLinky

  2. chaosinkent
    September 11, 2017 / 9:35 am

    I hate that you are going through this, I cannot imagine how it must be for you. I do love however, your positive attitude and your motivation to keep going. Always here if you need to just have a rant or a moan though, remember that bottling it all up is not good for you either. Xx

  3. September 11, 2017 / 9:53 am

    Thank you for your kind thoughts, I think that without being positive then I wouldn't have come so far now, but I still need to offload sometimes xx

  4. dogwooddays
    September 11, 2017 / 11:49 am

    Oh my! I feel for you so much and admire your determination. Love and best wishes for the strength to fight and to find the treatment which helps you. Xxx

  5. September 11, 2017 / 11:56 am

    I'm sorry to hear this Anne. It must be very frustrating for you. I think your positive attitude towards this is amazing. You are a true inspiration and I know you have the strength and determination to kick its arse and not let it consume you.
    Sending love and hugs x

    Thanks for sharing with #MMBC. Have a fab week x

  6. September 11, 2017 / 12:57 pm

    Oh my! It seems to be one thing after another for you but you are amazing. An inspiration the way you are so positive and determined. Good luck. I hope you find a treatment that works soon. #MMBC

  7. September 11, 2017 / 4:46 pm

    I'm in awe of your positivity. Keep fighting! Lots of love. Thanks for linking up with #TheMMLinky x

  8. Lisa
    September 11, 2017 / 8:44 pm

    I have never heard of your condition but it sounds like you have a battle on your hands and you are ready for the fight. Your strength and positivity is admirable. #TheMMLinky

  9. Virtually All Sorts
    September 12, 2017 / 8:07 pm

    Lots of determined talk here which is a great attitude to have. I do hope your consultant listens to you because you deserve that. #TheMMLinky

  10. September 17, 2017 / 7:54 pm

    Your attitude is amazing and that's what will keep you going through the lower times. You are amazing! #TheMMLinky x

  11. September 18, 2017 / 4:12 pm

    I found you through the #MMlinky and I'm so glad I did. I'm fascinated by your story, and your strength! Keep fighting, you're awesome x

  12. Candi
    September 21, 2017 / 5:30 pm

    I didn't realise just what you are dealing with, it puts everything into perspective, and you have every right to write about it as much as you want on here – I think that the more you write, the more it will help others, in so many ways xx

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