“MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS

We’ve had the pleasure of featuring many PatientsLikeMe members on the blog, but never one with a nickname quite like this. Anna is living with MS and we caught up with her to talk about coping, finding support, her motorized scooter and where the name “Mad Anna” comes from. Read below to see what life with MS means to her along with a poem she wrote not long after being diagnosed. Thanks for sharing, Anna!

Will you tell us a little about yourself?

I’m 56, mad as a brush (but responsible in the necessary ways). Love nature and the great outdoors. Used to walk (had dogs) and cycle loads. I’ve mostly worked with vehicles/transport after a start in office work, which I hated, so I moved on to chauffeuring, bus driving, driving instruction (cars, buses and lorries), agency lorry driving while I ran down my driving school in readiness for…tube train driving. Fate playing its hand in getting me from a self-employed status to employed by a company (London Underground) who doubled my 10-year pension with them and medically retired me when I was too crocked to stay there. That move also enabled me to leave a bad marriage, but that’s another story. I’ve been, happily, with my partner for 10 years now, and we’ve lived together for 6 of those. He’s lovely and supports me without being ‘arm-strokey’ about it, which I’d hate. We’re similar in temperament and just adapt when necessary and get on with it. Oh, and we laugh lots!

What was your journey like to diagnosis? How has your life changed since MS?

Aaah, the ‘six million dollar’ question. Since I was in my early teens, or maybe even a bit before, I’ve had unexplained illnesses. I thought hormones played a part as I was usually worse during PMT. I started periods when I was 11 and the PMT really kicked in about a year later so it ties in. I was always ill after a big life event: house move, job move, parachute jump, etc., but as doctors’ tests were negative, I got fed up with being told “The tests are negative so you must be ok…”…….what??! So I went to the doctors because I was “ok”…I think not!

Finally, after an MRI showing lesions in my brain, I was diagnosed at the age of 52, 3.5 years ago. My doctor phoned me one Staurday and told me he thinks it’s MS, but the neurologist would confirm it the following week. I can only think he phoned me because he was shocked (I ended up comforting HIM because I felt bad for him having to tell me). Afterwards, I was left with thinking about it, alone, because my partner Bob was out for the day and it was the weekend, so there was no professional I could talk to. I just tried to put it out of my consciousness and let it sink in naturally. Poor Bob was more shocked than me, I think, and a friend who’s an ex-nurse hit the roof that he’d told me like that and pointed out that the news could have tipped me over the edge to take my own life or something. I’ve since heard that suicide is quite high amongst MS sufferers. I can understand that, on a bad day futility seeps into my mind…BUT…my spirit kicks in and bollocks me (she’s a stroppy mare!) and I’m back. I always say that if that side of me ceased to exist, then it probably would all be over. One of the tablets that the GP prescribed made me say to Bob “Death seems like a good option”…we said in unison that I’d be coming off those tablets then! I take as little allopathic drugs as possible, preferring vitamins, natural progesterone and a delta 8 tincture from Area52 (great for pain and spasms)…it’s a shame that all that National Insurance can’t be put towards it. Pharmaceutical companies have it all sewn up, don’t they? Quick kick my soapbox away before I get started!

Sorry that was an immensely long paragraph! The other questions about how it’s changed my life is more straightforward, you’ll be please to know, haha. I was medically retired (they call it medical termination…ooer) from work as I could no longer walk without the need of crutches and as I was a tube train driver, for some reason (oh, that’ll be 640 volts!), they wouldn’t allow metal crutches down on the track. Oops. I was getting far too tired to commute and work a full day anyway. Bob & I worked together and sometimes I’d just sleep all the way in and all the way home, I was so knackered. Fatigue and mobility are the main two ways it’s changed my life. More about that below…

Who are Pegasus and Mad Anna?

Pegasus is my beloved Tramper (off-road mobility scooter). I first saw one on Top Gear, a 3-wheeler, and was impressed. I was still working, not yet diagnosed and not realizing that my mobility would get this bad, so it went forgotten until a year or so later. When mobility had become bad and the MS symptoms were invading my time, psyche and body, I became a bit withdrawn and stopped going out much. I couldn’t walk without pain or crutches and it was all an effort. I don’t know what prompted us to talk about Trampers but I then phoned the company to inquire about second-hand ones (they’re not cheap!) and the rep advised me to try one at a nearby country park that lent them out for free. We went…I “tramped,” I chatted with dogs…and their owners…I twanged branches as I sped through the woods, I laughed…I LAUGHED…and when Bob asked me if I liked it…I cried. Damn, I’m doing that now too, it was very emotional because it was so good. I felt like I’d got some of my life back. I’d loved walking, horse-riding and cycling in the past, had dogs and lived in the country, and missed it all so much. Now? I have been known to ‘click’ Pegasus like a horse (with no audience thank goodness). I am friends with many horses, donkeys, dogs, guinea fowl (on a farm nearby), oh and people, now and the words I have on the back of my seat say it all “I like the free fresh wind in my hair, life without care, I’m broke, it’s ok…” taken from one of my favorite songs, “The lady is a tramp.”

Mad Anna? Oh, I’m me. That’s it really unless you want me to write pages! Hahaha. See above in the ‘about me’ section, that’s me. I don’t do ‘pretence’ or falseness. I’ve never really but have got more ‘me’ as I’ve gotten older. When I turned 40 I said I’d never ‘suffer fools’ again. I was wrong, another long story, but when I turned 50 I said I really wouldn’t suffer foold…which means that when I turn 60, 70, 80 (and more???) I’ll probably be a right stroppy old mare! Haha!

What’s a good day like, and what’s a bad day?

Hmmm, a good day will see me up, showered and dressed before 10 and not so knackered that I can’t function for an hour. I will then go on to do something, go to the shops, the MS centre, or a Tramp. Have a short nap/rest/stretch then spend the evening with Bob, or alone (he works shifts) watching a film or similar. A Bad day will be what I call a ‘bed day’ because that’s where it will be spent. Shower? Dreass? You’re having a laugh.

Most days, however, are somewhere between those. Whole days are never the same all day. I liken having MS to riding a roller coaster like a rodeo rider would ride a horse. One arm flailing about as the horse bucks…YEEEHAAA! Sometimes, though, I feel like hiding inside the car while the roller coaster relentlessly keeps going. All things are done with rests in between, e.g. Get up late, 10-12ish, shower (if I can manage one), rest, dress, rest, breakfast, rest, potter a bit, rest, lunch, longer rest, Tramp (on a good day), rest, TV/write/read/chat, bed for the night. If I were to plot it on a graph it’d look like a mountain range or a big wiggly line!

How does PatientsLikeMe help you manage your MS?

I’d wanted to keep a health diary for ages but never got around to it, so PatientsLikeMe offered me the opportunity to do just that. Once I’d joined, I found some of the forums interesting and have had some nice chats. We’re all different, of course, but it’s interesting on many levels. MS doesn’t define anyone, or at least shouldn’t. I’m first and foremost me. I happen to have MS, which is kind of all consuming in many ways, but my character is bigger and stronger than MS and will not be changed by this b*ll*cks. 😀 Please excuse the language, I’ve always found a good swear is a good way of releasing angst and getting me through adverse times, so it gest used lots nowadays. It’s my way. For angst I also have a punchball…and some lovely bright pink/fuchsia boxing gloves. Having fun in life is a necessity when at all possible.

I don’t know if this is of interest, but I wrote this poem not long after diagnosis:

“Letters after my name
When you’ve got letters after your name that’s sometimes all people see
Some wear them like badges to define themselves. But that’s not for me
This is who I am. My big heart, my smile, my love
Not some label, description of an outside thing, given from above
For forms I’m asked is it Mrs, Miss, Ms? I have to say the latter
But I’d rather you use my first name as the label doesn’t matter
Twice married, twice divorced what title would you give?
Apart from ‘fussy’ I’d prefer a description of the way I live
I love the great outdoors, wildlife, photography, swimming, dogs
For me my life isn’t something contrived or written for others in blogs
I grab it by the short n’ curlies, give a shake and see what falls
Life’s expansive, fun, a challenge, whatever. It’s not contained within 4 walls
That’s why I refuse to weat the label endowed upon me by others
Or live my life as part of a club, a ‘merry band of brothers’
Although my title would be balanced by those suffix letters that is
I refuse to live under an invisible cloud of gloom that is MS.”

That’s all folks!

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