A.S. Face 0389: Charlotte Louise Folkes

I am 39 years old, single mother to Rosie (coming up to 4 years old). My diagnosis is psoriatic spondylitis, which is the same as AS but with the skin disease, psoriasis. It also tends to mean that the arthritis is not so symmetrical. My left side is worse than my right.   The arthritis really began to get severe about 8 years ago and I struggled to keep my career going. At the time I was lecturing in Computing at University of Greenwich, London. They were not kind to me as employers go and I was maneouvered out of my job. That was a shame, as in theory, academia is somewhere that should be a good environment for a disabled person. I was very devoted to my career and sad to leave my university “family”!   It is an unfortunate truth that people who develop chronic illnesses sometimes find that their real families are not as supportive as they would like. Despite the fact that other members of my extended family also suffer from arthritis, it is almost as though they were ashamed of it. They see it as a weakness.   In life you can take hardship and use it as an opportunity for personal growth, or you can let it beat you down. I chose the former. I realised that I was more than a career. I learned to survive on less money – though I have always enjoyed being thrifty. I don’t miss the material things that other people seem to live for. Although pain prevents me from doing many of the things I used to do, I have a keener appreciation of the times when I am well enough to engage in them.   As far as the physical side of my illness goes, my neck is the most painful and I suffer from what I call “neck-graines”. These are migraines which start off in my neck. Like most of the other Faces, I have lower back pain, heel pain and discomfort in many other joints. It is something of a myth that spondylitis only affects the spine. Recently I was also diagnosed with fibromyalgia. Basically my whole body is involved and most days I wake up feeling like I was hit by a bus!

It took quite a while to get diagnosed, which is common. It wasn’t until I got a second opinion through Guy’s hospital in London that the correct diagnosis was made. They are a fabulous team up there and I was able to get access to some very expensive medicines which are unavailable to many people in the UK. Unfortunately they just don’t work for me and the best relief I get is from a low dose of Prednisolone. This is to be used sparingly, though, as it has bad side effects used in the long-term.

Being a single parent to a toddler is perhaps not the ideal situation for someone with arthritis, but it has also helped prevent me from focussing too much on my own problems. I am too busy for that these days!   The best advice I can give anyone with AS is to keep your sense of humour! You are more than the sum total of your aches and pains!

Lewisham United Kingdom

6 Responses to “A.S. Face 0389: Charlotte Louise Folkes”

  1. Glad you shared your story. I have many paralells. I was fired from a job simply because I was filing for short term disability. Another job laid me off a couple of days before brain tumor surgery, though my employee review was the highest of all the company. I do hope God will “double us for our trouble,” so to speak. My AS also has skin & other involvement, but my longstanding AS ,for 30 years without treatment,caused my auto-immune to allow cancer cells to form. I was diagnosed by two past rheumatologists with fibromyalgia before the AS and new Rheumatologist said I don’t have fibromyalgia, but AS. I question if I have both. I am in pain day and night despite cellebrex, sulfasazine, twice daily vocotin, tramadol, cymbalta & etc. I also fall a lot from collapsing joints and balance issues and use a cane and walker. Rheumatologist says unneccessary. Huh. I have osteoporosis along with the AS and cannot fall again. I hope other people have a more caring rheumatologist. Mine gets frustrated that the chemotherapy keeping me alive makes my AS worse. Any feedback out there?

  2. That has got to be the cutest picture on FACE’s so far! Keep reading FAce’s Charlotte, you’re new AS family is very understanding and supportive. I just have so much respect and admiration for the ladies of AS who, despite AS, raise these wonderfull children. I just so admire you.

  3. Dear Charlotte,
    Thank you so much for sharing your story with us. I agree we are so much more than our diseases, Keep the humor alive!
    Sincerely Cookie

  4. Thank you for sharing your story!!! I so needed to hear “you are not your career!!!” I’m struggling with that and I am going to a new Rheumatologist and seeing someone that cares about his patients. I too am struggling with the neck-grains but never had them diagnosed as that. Thank you for you positive attitude!!! It does help me with my emotional struggles on this journey.

  5. Love the photo Charlotte! **hugs**

  6. To the strong and the brave! Us mummy’s have to keep going! You live quite near me too as I am from Croydon!

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