Young, Sick and Invisible

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

Guest Post: ' Jane's Story.'


I’m Lady Janey and I am married with no children but I do have a dog, Barney otherwise known as privilegedpup. I have relapsing remitting Multiple Sclerosis. Before I was diagnosed I loved flying as I was working as airline cabin crew but the work was too difficult once diagnosed,

I am still able to work as I changed careers and went into teaching but now work just part time and am leaving completely in summer as the job has become too stressful and physically demanding.

I had what felt like pins and needles in my feet, which intensified to such an extent, that I was struggling to walk as it affected my balance. I also had a numb bottom- a very odd feeling! Diagnosis was easy, I was very lucky. When I reported the symptoms to my doctor, he sent me for blood tests. I was then sent to the local hospital where I had an MRI scan and a lumbar puncture. Diagnosis followed quickly afterwards because I had been kept in the hospital as a patient until I could meet with the consultant.

I did search the internet looking for help and my first source of valuable information was via the MS Society whereas nowadays there are a lot of very helpful facebook groups. Patches of numbness can appear anywhere- head, bottom, legs, feet, arms, hands, elbows. The pins and needles sensations are always predominantly in feet and hands.

The pins and needles is like walking on brillo pads.

The numbness makes parts of the body feel 10 times the size they are. Sometimes my hands feel like all my fingers are twisted over each other and I can’t get a grip on anything properly. I flare at least once a year with relapses lasting 2- 3 months. I suffer mostly from fatigue during relapses as it really limits what I can do on a daily basis.

I manage/cope with the flares by trying just to do as much as I can but taking more breaks and cancelling any unnecessary commitments. I don’t take steroids as they make me feel even worse even if they quicken the rate of recovery. My main trigger are stress, getting upset and doing too much. I take the disease modifying drug Tecfidera- twice a day

My biggest tip is to be kind to yourself. Know and respect your limits and your illness.

My illness has influenced my jobs as has restricted promotional opportunities and I have had to change careers and now work part time. However had I not been diagnosed, I wouldn’t now be writing my blog!

It has stopped me from travelling as much as I used to. I used to go all over the world but it’s just too exhausting and travel insurance is extortionate. My real friends have been supportive and they understand I can’t always commit to things or do everything I’d like to do and they also understand if I can’t attend anything last minute due to the unpredictability of the illness. I am very lucky to have such an amazing husband who has stood by me throughout.

I stay positive by raising awareness of the illness whenever I can and by remembering that there are a lot more people in the world who are suffer from things more worse than me. My hope for the future is that there will be a cure for MS.

- 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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