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My day-to-day journey through life with Multiple Sclerosis

  • By Amazonlady

    I was diagnosed with Multiple Sclerosis in July 2013 after 14 months of tests; it didn’t really come as much of a shock because I known that something was wrong for a long time. I had done a lot of research and all my symptoms pointed to MS… plus a lady at work whose son had recently been diagnosed, and his symptoms were the same as mine.

    The consultant said, “I’m sorry to tell you but all the tests have eliminated everything else, and your lumber puncher fluid confirmed Multiple Sclerosis”. From that day a great deal has happened… I lost my job or should I say, “Retired due to ill health” I had a managerial position, drove a car and attended meetings with other professionals. I never took a sick day in the 6 years I worked there, even when I had to attend hospital appointments I took the time off as holiday entitlement; I was never late and was often at my desk before anyone else. All in all I had a strong work ethic and valued my position in the workforce.

    After my diagnosis I didn’t know what to do with my time. I had always worked and at 53 surely too young to retire. I felt I must be able to do something, I could walk ok with the aid of a walking stick (matched to every outfit) still drove my automatic car, so I planned to start a business selling walking sticks to the bridal market.

    Things went well for the first 6 months I managed to fit in all my hospital appointments with my MS nurse, Physio therapist, Doctor and Consultant, things were going fine until “BANG” down hill I went… my mobility became more laboured to the point were I had to use a Zimmer frame, and no longer felt confident to drive.

    That was a big shock I had driven since I was seventeen so losing my independence hurt. We live in small isolated country village so I had to rely on my Husband to drive me everywhere. Fatigue hit me like a lead balloon, so the business venture went on hold. I had a fantastic team of professionals behind me and if I wanted anything I just had to ask, my MS nurse was my life line and we communicate by email which was great and saved me having to visit her at the hospital.

    I had endless prescriptions for endless pills, some worked some didn’t; we decrease the dosages in some and increased others until we got it right… the pain subsided and the spasms were under control, everything seemed to be going well so I was keen to carry on where I left off with the business. Then one day “BANG” I fell in the lounge trying to get to my chair from my frame… I missed and down I went.

    I shouted for my Husband who managed to get me to my chair but the pain was excruciating so I called the doctor and explained what happened and the nurse call an ambulance. I ended up in our conservatory in a hospital bed with airflow mattress a broken leg, pins through my ankle and a plaster cast up to my thigh for next 8 months.

    I had to contact the local council to see if we could get a DFG (Disability Facility Grant) as I was not working and on Disability and ESA (Employment Support Allowance) and my husband was now my full time carer and we did not have the funds to pay for a stair lift. I so wanted to get back upstairs, not only to sleep in my own bed again with my husband, but to have a shower because I had been washing in a very small sink in our down stairs clock room for the last 8 months, not the best of places and my dear Husband has had to pick an outfit for me and get me dressed in the lounge, and do the reverse at night before he wheels me into the conservatory to get me into bed and settled for the night. I was catheterised whilst in hospital and have been ever since, just one more side effect of my MS is bladder urgency, and I certainly couldn’t manage to get to the toilet. Anyway I think that will do for now. There are more stories about my day-to-day antics along with some useful information and some funny tales on my blog so I do hope you will take the time to visit http://www.amazon-lady.com

    Keep well all Deborah (AKA) Amazon lady

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  • By Kim Dolce Moderator

    Hello Deborah! I read a few blogs on your site and so appreciate your humor and unique voice. Congrats on the acquisition of your red wheelchair, your mum is a special lady. I hope you will someday get the electric bed funded, too. Thanks so much for sharing your blog site! Hope to hear more from you.

    Kim, moderator

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