Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Pauline's Story'


Bubbles

Hello everyone, my name is Pauline Dorrington and I am 75. I have two grown up daughters and four adorable granddaughters. I cannot be classed as Young, Sick and Invisible, but that is because it has taken many years for me to be diagnosed with Chronic Fatigue. I have seen Cardiologists, Opticians, Gastroenterologists, Urologists and finally Neurologists. All trying to find out what was wrong with me. My G.P. was convinced there was nothing wrong with me, so the more negative comments I received from all the Consultants I visited just proved to her that I was making it all up.

The last ‘ologist’ I saw was a very kind Neurologist who was determined to find out what was wrong with my body. A body which didn’t allow me to be very active, a body which stopped me from going to my Gym to join in with the water aerobics class, which I loved. A body which stopped me from visiting friends, and dreading anyone who said they were going to visit me. Why? Because I am unable to keep up with the mess in the house. I do not go away on holidays, make plans to go to the Cinema or Theatre. I am unable to go out on my own, so I am unable to go shopping.

The Neurologist who helped me tested for Parkinson’s Disease, but I didn’t have trembling hands. He tested for MS (Multiple Sclerosis) and many more conditions. He was the only one who not only recognised there was something wrong, he was the only person who persevered. He made arrangements for blood tests, X-Rays, Scans and MRI Scans. All came back normal.

Finally, when he had sent me to everyone he could think of he looked at me sadly and told me there was only one thing left that may be the answer – M.E. (Myalgic Encephalomyelitis). He asked my G.P. to arrange for me to visit a Fatigue Clinic. She was still unconvinced, I could tell she really didn’t want to waste her time on something she thouhgh was not necessary.

So I sent her an e-mail, and this is what I wrote to her: “My mornings start off well, but any activity will bring on exhaustion, weakness, slowness and a foggy head. I will have blurred vision, difficulty in concentrating, my legs feel as though they are two solid pillars of concrete which are heavy and extremely painful and which I cannot balance on so I ‘wobble’. They can get so weak they become hard to move, (in fact last night I was walking across the front room holding a tray in my two hands. I slowly wobbled over to my chair, got half way and my legs started to slow down big time, then they suddenly came to a halt. I couldn’t move them at all. My husband who was watching me jumped up and took the tray out of my hands and helped me to sit down in my chair).

If for any reason I am unable to sit down and rest I will have difficulty in breathing, which will cause me to have difficulty in talking. I will also find it difficult to form and find words. I always look well. I always sound the same, therefore no-one really understands how I feel.”

My G.P. immediately arranged for me to have an appointment but had to secure funding first, which ultimately I was given.

“Yes,” the Consultant told me, “you definitely have Chronic Fatigue, brought about by your Adrenal Gland not working properly. In a nutshell, it had run out of juice – all the traumas in my life as a toddler, as a young adult and coping with a Chemotherapy which was too strong for my body, all contributed to damaging my Adrenal Gland (this is the ‘fight or flight’ gland we all have to help us if we need some extra strength). There was no cure, nothing that could help me apart from one small piece of advice. When I feel totally devoid of any energy I would benefit from eating something. “It would restore some energy,” she told me, “and recharge me.” And it works.

That was two years ago, and just as all my symptoms have crept slowly, insidiously; ever worse, I am finding it difficult to do anything for longer than an hour. I will ‘crash’ in a weak, sweaty, heap on to my chair and stay there and rest. Rest, glorious rest. It is the only thing that helps. It is the only thing I can do, and it has taken years and years for my husband to realise I am NOT being lazy, I am NOT just using him, I am truly and sincerely unable to do anything, even read…..or write.

Writing is my life, I have always written and I have almost finished a series of thirteen books. I hope I can finish the series. When I type now I can only type for half an hour, if I leave it any longer than that my head will suddenly start to feel like a sponge that someone is trying to squeeze water out from. My eyes will blur badly, and I would lose my eyesight altogether if I continued. I would sweat profusely and every ounce of energy in my body will drain out like sand in an egg-timer. With difficulty I have to quickly log out of my computer, and by dragging my energyless body by holding on to furniture I have to get to my bed and ‘crash’ on to it before I ‘crash’ on the floor. I will stay there on my bed, unable to move for at least two hours before order is restored and I can think, move and get up.

If there has been one sad thing in my life it has been that I have never had anyone to talk to about this. No-one who really knows how I feel and really understands. That is until now, the moment I saw this blog and picked up on the fact that Chronic Fatigue is just one symptom for anyone suffering this terrible, debilitating disease called E.M. I felt something inside me ‘wake up’. I was enthralled and entranced at every word of every blog. I feel part of something, if only a small part, but a part nevertheless. It makes such a difference, it is such a help. It gives hope and help, support and the most amazing feeling I am not alone after all.

I thank God for bringing me through all that I have been through, and for bringing me to your page Bethany. Thank you so very much. God bless you and everyone who reads your blog and obtains information, help and support from it.

P.S. It has taken such a long time for me to type this I can feel my eyes beginning to blur, my head beginning to hurt and my energy beginning to sap. So I do wish you all the very best for the New Year.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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