Young, Sick and Invisible

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

Guest Post: 'Jenny's Story.'


Sunny backyard

I’m Jenny, a married Mum of two who is 39 years old. I was diagnosed with Multiple Sclerosis (MS) in 1994, when I was 15 years old. MS is a chronic, degenerative, neurological disease that affects the nervous system, with those diagnosed often having difficulty with sensation (e.g. numbness), mobility, fatigue and ‘cog fog’.

I work as a Speech and Language Therapist, helping children with communication problems; I love my job but am really starting to struggle with it, because of my MS. Unfortunately, it has become progressive over the past six years and I now struggle with walking and completing a full day of work, due to fatigue and difficulty concentrating for extended periods of time. As such, I am now having to look into ill health retirement.

Crutches

The first signs I had that something wasn’t right were that I developed a ‘blank spot’ in my vision in one eye, when I was 13, and also had a period of my legs going numb at age 15, with me not being able to walk. My parents (who were both in the medical profession) quickly hot-footed me to the doctor. I was diagnosed pretty quickly after seeing the doctor, they linked the eye problem with the later leg problem and realised it was MS. Because I was diagnosed at such a young age, I was really unaware about MS before I was diagnosed and, of course, we didn’t have use of the internet to tell us abut it! So I read some articles from the MS Society, which helped me to understand what it meant, then pretty much just got on my way over the coming years. I was lucky in that my relapses were pretty few and far between in the first 15 years or so; when I was well I loved to run, dance and travel, often walking around for ages in new cities and on holiday somewhere far away.

Over the past 6 years, my MS has turned progressive; in my case, this means that I no longer have ‘flares’ where things improve but instead have constant symptoms. Having said that, certain factors do trigger a worsening of symptoms, such as hot weather, not having enough sleep or stress. Having a temperature also means that my symptoms worsen – last time it went up by just one degree, I couldn’t physically sit up! Although I feel like my mobility issues are very inconvenient to me – I have to use a mobility scooter and crutches – it is the fatigue that I deal with every day that is so hard. It often feels like I have massive bags of sand on my legs and arms and any kind of movement just seems impossible, and mentally I am just ‘slow’ - I find it hard to think clearly or use the right words. Luckily I have found out over the past couple of years what I can do to help myself. The number one thing is rest. Just taking the time to lie down for an hour makes a big difference and I have learned to say ‘no’ more often, because I know that too many ‘busy’ n days will have a big effect on my health. Gentle yoga and stretching help my legs feel less stiff and I eat healthily, which I find impacts positively on my fatigue levels. In addition, I use Baclofen (a muscle relaxant) at night, to help my stiff legs. Unfortunately, at the stage my MS is, there is no medicine I can take to stop the progression, but I find that alternative remedies, such as massage and meditation, can help the symptoms and my mood.

Coffee in bed

For anyone newly diagnosed with MS, I would stress the fact that they shouldn’t let the diagnosis stand in their way; there are more medicines available now which can help and research shows that eating well and exercising really can have a positive impact on the disease. People are there to help; my work have been brilliant at making adjustments to help me stay in work and my friends and family have been nothing but supportive. Being open and honest about my illness has made me realise that people want to help.

MS is a complex disease; symptoms vary so greatly between people who are diagnosed and even within the same person; they vary month by month, day by day, even hour by hour. MS has taken a lot from me; my ability to exercise, to be as social as I want to be and my ability to wear high heels! But it has also given me so much; I have a healthier lifestyle and I appreciate every single day, whether that’s playing board games with the kids, spending time with my folks or having date night with my husband. Ultimately, it has made me a more understanding person; I’m more aware of the difficulties that others face and I feel that my children, who are now 8 and 10, are too. I started my blog when my symptoms became more pronounced; through it I have met many online friends and learned so much from others going through similar things to me.

My hope for the future is that my children will remember me as a great Mum, despite my illness and that something will be found that will help to stop MS progression or even cure it. Fingers (and toes) crossed!

Jenny trippingthroughtreacle.com

Social media:

Twitter: @trippingtreacle

Facebook: @trippingthroughtreacle

- 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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