Me and my MS
Poppy Hasted was diagnosed with multiple sclerosis in 1985 at the age of 24. She had just started her first job after graduating from Liverpool Polytechnic with a degree in librarianship and information science.
Now 55, Poppy has two grown-up daughters, both born after her diagnosis; has completed a post-grad law degree and is now hoping to become a writer. These days, she is primarily restricted to her bed, but any glass on her bedside table will always be half full.
MS is an interesting disease: it affects everyone who contacts it differently. This week is MS Awareness week so, as someone who has been diagnosed with the condition since 1984, I have been thinking about what people need to be made aware of regarding MS.
Firstly, I think the most important thing to say is that MS is not a disease you can die from.
People with MS die WITH the condition, not because of it. People with MS can, and do, live long and productive lives; we are not immobile, helpless people who are in constant pain, suffering daily from the effects of the disease on our helpless bodies.
Rather, we are men and women, young and old, rich and poor, who are just getting on with the fun of living.
MS is a disease which is very arbitrary in the way it affects the people who are diagnosed with it. Most people are told they have the disease in their mid-20s but you can develop it at any age and people have often been experiencing the effects for many years without really realising it, before they visit the doctor.
It's not as if there is a specific symptom which makes you feel ill; you don't come out in spots or develop a high temperature or fever or start bleeding profusely. You just have bits of you that stop working the way they did and you start to notice this.
About multiple sclerosis
• MS affects more than 100,000 people in the UK
• MS symptoms typically appear when people are in their 20s or 30s
• MS attacks the nervous system. Symptoms include sight loss, pain, fatigue, incontinence and disability
• MS is unpredictable - one day you can be fine, the next you might lose your sight or be unable to move
The MS Society is the leading UK charity for people with MS. The charity has a free helpline: 0808 800 8000 and information can be found at www.mssociety.org.uk
Then, when you eventually visit your GP, he or she will not give you an answer straight away. You are most likely going to face weeks and even months of tests in hospital outpatient clinics while people work out what you HAVEN'T got, rather than what you HAVE.
I was tested for everything from shingles through to a brain tumour and all things in between before I was told I didn't have any of the things they had tested me for… so the only thing left it could be was MS.
After that, I was then very lucky - far luckier than many others - and for this I am extremely grateful. My wonderful and supportive GP said I would probably have many questions, worries and fears and I could ring him any time I liked. He gave me his home phone number.
I think that, maybe because of this, I never felt the need to ring him and ask anything. Just knowing I could if I wanted to was the most reassuring thing he could have done.
"You will have good days and you will have bad days but that is the same for everyone, regardless of whether they have MS or not."
I was 24 and very scared but that GP saved me from going out of my mind through his caring and wonderful attitude to something that was life-changing. He gave me the courage to go on with my life and continue to live it to the full.
As a result I now have two amazing adult children - both of whom were born after my MS diagnosis; a fulfilling and productive working life; many amazing friends I might not have met if it hadn't been for the MS; and the strength to go on being me.
Earlier this week, I was asked, "What is the best advice I could give to someone dealing with a recent MS diagnosis?" My answer was to go on being you. Don't let this condition beat you and drag you down.
Yes, things may change and your life path may be different from what you thought and hoped it might be, but that shouldn't stop you.
You will have good days and you will have bad days but that is the same for everyone, regardless of whether they have MS or not.
MS is not the end of the world; it is just an unanticipated challenge that can, if you learn to fight it, just strengthen you and help you become a rounded and complete individual.
What other advice would I give to someone who was newly diagnosed? Have fun. Live your life to the full and enjoy it. You only have one shot at it; you can't come back and have another try, or do it differently so, despite the fact that you have been dealt a tricky hand, don't let that stop you.
So have fun and fight. Don't sit back, feel sorry for yourself and despair, it's not worth it. MS is not a death sentence, don't let it become one.
You can read Poppy's blog here: https://poppyhasted.wordpress.com