IMG_0689
(My sister, and Posetta Baddog)

My sister Holly was diagnosed with MS in the late 90s. It has not been an easy ride for her over the years, and I am thrilled that she is appearing here on LLG again to talk about MS in MS Awareness Week, in association with the MS Trust.

This year the MS Trust is 21. Since they were founded 1993, we’ve seen a lot of big changes in MS support and care: the first MS specialist nurses, the first disease modifying therapies and more and more positive, practical, reliable MS information.

MS affects everyone differently, and everyone has a different MS story. To mark their birthday they’ve asked some of their friends and supporters for their perspectives on the big achievements of the past 21 years and the big challenges of the years ahead.

My sister Holly is one of those 21 who have contributed an essay, and I am very proud to run an extract from it here. Holly battles with the strain of living with MS today and I think it is hard for even her family and friends to really comprehend what it is like to live with the disease.  Her piece explains the journey she has been on over the past sixteen years, and it is heart breaking.

(If you aren’t sure what MS is, and how it can affect people, please read my MS primer here.)

Over to you Holly:

This year marks not only the 21st anniversary of the MS Trust, but the 16th anniversary of my own MS diagnosis. I feel fortunate that throughout my journey the MS Trust has been there to offer support, not just by being a trusted source of reliable, accurate information but by providing a welcome human touch with its helpline.

When I was diagnosed in 1998 my overwhelming feeling was one of relief; at last I had a reason for the overwhelming fatigue and weird constellation of symptoms that had dogged me since school. I wasn’t just a lazy hypochondriac!

The challenge I then faced was finding out more about this MonSter that was blighting my daily existence and casting a shadow over my future. Then my knowledge of MS was limited to knowing it was the reason my drama teacher left and returned to visit in a wheelchair, and it was what had cut short the life of Jaqueline Du Pre. The internet was still in its infancy; although the MS Trust launched its own website in 1997, I didn’t own a computer.

So instead I turned to its leaflets, relieved to find a comprehensive source of clear, accurate, non-alarmist information. Since then the internet has exploded and there is so much ‘information’ on MS that it has become a minefield, so the role of the Trust has been a key resource – a trusted, concise source of reliable information that cuts through the chatter of ‘miracle’ cures, personal claims and dodgy information that now litters the web.

My own initial diagnosis had been the most common form ‘Relapsing Remitting MS’ – but it wasn’t clear where the remitting part was! New symptoms constantly appeared, adding to the existing ones that refused to go away. Back then treatments options were very limited (there was no widespread access to the two available types of Disease Modifying Drugs).

Two years on from diagnosis I moved to Miami with my job, having convinced the company’s occupational health doctor that my MS barely affected me. One of the better aspects of MS is that the majority of MS symptoms are invisible, so you cannot tell how someone is affected simply by looking at them.

Ironically, at this particular medical I was suffering from a bout of optic neuritis and had lost the central field of vision in my right eye. As the doctor did not examine me he was none the wiser. So off I went with an apparently clean bill of health. Inevitably, as this wasn’t exactly a true assessment, I then spent more of my time in Miami in hospital than in the office.

As an inpatient I was frequently visited by medics curious to see this patient from the UK who was an example of what happened when MS went untreated. It was there that I met a fantastic professor of Neurology who gave me a first glimmer of hope. He was developing trials for a new type of drug (a monoclonal antibody called Antegren – now called Tysabri) and his excitement was palpable.

He urged me to participate, but unable to commit to staying in America for the duration of the trial, I reluctantly returned to England clutching the name of an English neurologist he said I should contact with a view to participating in the UK arm of the trial. Then followed my darkest years.

I was accepted onto the trial here, but it was a blind trial and I was unlucky enough to receive the placebo (saline solution). It felt like my health went into freefall and I felt abandoned and unsupported. My mind seemed to disintegrate as fast as my body. In desperation I left the trial and returned to my local hospital under the care of my old, trusted neurology team from my pre-America days.

At last I was started on active treatment (Copaxone, which was now widely available under the Risk Sharing Scheme) and my health stablised. Too much damage has already been done though and after several years of long term sick leave I reluctantly accepted Ill Health Retirement from my employers.

Then an especially vicious attack found me in hospital in 2010, unable to even sit up. As frightening as it was, it had an unexpected positive outcome. My diagnosis was changed to Rapidly Evolving Severe RRMS and thus I became eligible for treatment with Tysabri – now available on the NHS following approval by NICE for use in severe cases. So a decade after my American neurologist had talked excitedly about this revolutionary treatment, I finally received it.

To read the rest of Holly’s piece, and the other twenty contributions, please click through to the MS Trust here

Screenshot 2014-05-02 19.05.13

 

Related Posts Plugin for WordPress, Blogger...

You May Also Like

8 comments

Reply

What an inspiration! Nice to have you here, Holly.
http://shadeofredblog.com/

Reply

Holly,

What a great understated piece about your illness. Having met you, I know what a brave woman you are. Keep your chin up, you are helping others.

Lots of love,

Helena

Reply

Hey Holly,

Thx for posting this, it’s v helpful reading yr story and journey with MS.

MS has given me so much fear since my diagnosis 18 yes ago, I appear to hv it mildly, although it has effected my gate and I do miss not being able to run, play tennis or anything that requires lots of physical movements using my legs! My walking is somewhat slowed down and climbing, or coming down stairs at a pace is not really doable, I also take the occasional tumble every now and then.

I do not talk about my ms with others, as I like to keep it to myself and just get on with it as my symptoms do not give me too much problem and being a mother of 7 yr old twins and a 12 yr old I like to be as positive and happy as I can be, I always tell myself there are people suffering so much more.

I miss wearing high heels, being 5 ft 2 I loved my heels and when the sky scraper version came into fashion a few yrs ago, I would look at them longingly! I do where a kitten heel or mid heel however and live my sneakers, yey they are fashionable for now!

I fear for my children that hey will not develop this, it gives me sleepless nights and live in hope that there will someday be a cure for this awful, illness, it does seem they are making progress.

My thoughts are with you and I so appreciate yr courage and taking he time to speak about ms, it really helps that you can share yr information – thankyou.

You seem to hv a lovely sister too, which is also a great help.

Sending love, hugs and prayers, thx Holly x

Reply

@Linda: Thank you Linda. I’m 5’2 as well and miss my heels too! x

Reply

This is such an inspiring post. My old boss has MS and I’ve seen how much of a struggle it is for her to carry on with her everyday life. Holly, you sound like such a strong, brave woman and I wish you all the best xx

Katy | Little Miss Katy

Reply

Wow, that post really made an impact. You write so well Holly. I think that the more people understand about this illness the better as I believe that there is still a tendency for some people to assume that those with MS are just “lazy hypochondiacs”. I wish you well. xx

Reply

Thank you so much for sharing your story, Holly. It’s refreshing to see an honest account not only of MS but the minefield of treatments and the politics around drugs.
My step-mother was also diagnosed with MS in 1998, on Christmas Eve. At first the doctors thought it would be the remitting type but it turned out to be Primary Progressive. At the time we were pushing to get the Betainterferon drug for her but the neurologist said she “wasn’t bad enough” to receive it and Milton Keynes only had funding for 2 patients in the city to receive the drug.
Of course, my step-Mum’s health deteriorated dramatically and quickly so it was then too late.
So for the past 12 years my father and baby sister (they managed to conceive straight after the diagnosis before it was too late) are primary carers and our lives have been turned upside down. I’ve had to move in to help out with my now-teenage sister. We have carers and nurses come into the house at least 4 times a day, to help my step-Mum. She can’t feed herself, she can’t stand, she can barely see, she can’t go to the bathroom by herself, she has a tube into her bladder and leg bag, and she is pretty much housebound now. My Dad’s health has deteriorated from years of lifting her, his back is nearly knackered, he’s get arthritis in his hands and that’s not to mention the mental health issues that comes with this kind of thing.
So yeah, MS sucks. And anyone that makes assumptions about MS should come visit our house to see how devastating it can be and how unfair the health system is.
Sorry, this wasn’t meant to be ranty comment. More, I just wish that there was better public knowledge of these so-called ‘mysterious’ diseases.
Thank you again for sharing your experience, it’s so good to hear you’re getting the support you need.
I wish you very well!
x

Reply

@Elizabeth @ Rosalilium: Dear Elizabeth – thank you, I never stop thanking my good fortune thus far. I wish though that more was done to publicise stories like yours – this is where the spotlight should be, not on the (admittedly admirable) people with MS who are still able to run marathons and climb mountains.

Of course I understand that people, especially those recently diagnosed, need reassurance that MS might only ever affect them mildly and many desperately want MS to have an ‘acceptable’ face, one that ensures they are not discriminated against or ‘written off’.

The problem that arises is that those least affected are able to shout the loudest, whereas those at the other end of the spectrum are usually too broken to even whisper and those around them are so exhausted by the emotional and physical burdens of caring that they have no capacity left to make a noise either.

Resources are necessarily limited so at some stage a judgement call has to be made – whose need is greatest? I firmly believe the bulk should go towards those most severely affected. Others believe differently. That is why the MS Society decided to stop funding specialist respite centres for the most severely disabled, diverting the money to subsidise mini breaks and family holidays instead. And that is why Team LLG and myself now support the MS Trust instead.

You and your family are in my thoughts,

Holly

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.