Young, Sick and Invisible

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

Guest Post: 'Nicki's Story'


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Hi, my name's Nicky Baker, I'm 53, married, with 5 children & 3 grandchildren, and 2 Labradors. I should be busy, active & helping others......and, indeed, that's how I was less than 2 years ago.

My past life included working full time with young people with special needs (physically & mentally challenging) and I loved being in the thick of it, plus being part of a dedicated staff team. Every day brought new, unexpected experiences and knowledge. I could drive & just go wherever I needed, whenever.

At weekends it was family & church. My grandchildren are amazing - all still very young, & being with them is very 'hands-on' Their cuddles & kisses are utterly wonderful.

Our 2 labs, Maddie & Hazel also need long walks daily..... I love to write poetry, inspired by our God & His creation....or, at least, I used to.

The above activities are now either impossible, or take a terrible toll on my body because I am stricken with several physical conditions, which have engulfed my days & nights.

I've had Raynaud's as long as I can remember, getting more severe as I got older. Work could be very difficult & I relied on hand & foot warmers, but often spent my days in pain, or tingling...but I just carried on.

Next, came chronic spinal problems, which I assumed would just calm down....wrong! I have severe degenerative disease & was told in no uncertain terms that I could no longer 'fulfil the criteria' for my job, and to come back when I 'got better' That was 18 months ago. My spinal pain, especially my neck, is excruciating & hampers everything I do. I'm awaiting surgery at some future point....

However, Raynaud's & spine disease are not my biggest problem - no, the real monster in my life is Erythromelalgia!

E.M, which started as a little sting in my toes, a year or so ago, has spread upwards, to cause intense, burning, swelling & pressure in both feet, legs hands, lower arms, at the slightest warmth, gravity, friction - typing this is making my fingers so sore - like salt in a cut. I also have started feeling warmth & soreness in my face..... I can't wear shoes, hence, can't go out unless in a wheelchair.

I've sold my car, because, basically, I'm on so many drugs (morphine, Gabapentin, sleeping tabs) that I don't feel it's safe for me or other road users for me to be driving, plus, I can't walk anywhere once I do arrive, cos of my fiery feet & legs. Can't do shopping, cos can't pick things up & hold them.

This dreadful agony has robbed so much of my world away & I don't know whether the meds help (except the sleeping tabs, cos without them, I wouldn't get a wink due to the fact that I burn under the duvet, but freeze & cramp if I try & cool down)

So, right now I can't work, drive, write, interact as I want with my grandkids, can't go out with my beloved doggies, can't even get out of my house unless someone else takes me. Totally disabled by a crazy disease that even my rheumatologist can't figure out.

Lots of 'can't'......but what I CAN do now, is spend time thinking of others, praying for others & encouraging other struggling peeps, even if it's only in a tiny capacity. I find that when I'm praying for someone else, I forget about my own pains.

Who knows what's around the next corner? I would encourage folk to take each day, hour, minute as it comes - that's all we can do folks. Sending love to all who read this.

- 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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