- Transverse myelitis
- Interviews
Ally's interview
How did all start?
A backache in the base of my spine. Tired and weak legs. Pins and needles and a constant "buzzing" feeling in feet and legs. Extreme lethargy and exhaustion. A constant headache and inability to think clearly (although this is probably linked more to my Neurosarcoidosis).
Do you already have a diagnosis? How long did it take you to get it?
I now have a diagnosis but it took over 4 months to get there! It was a struggle to be listened to or taken seriously in the beginning which is a shame. But TM is extremely rare and I read somewhere that it would need a GP to practice for over 100 years continuously to come across one case in their professional lifetime!
For what medical specialties have you been treated? What has been the most useful specialty for your?
Intensive Physio was really useful, although it was only for a very short time twice a week for 6 weeks. So I've tried to replicate and incorporate these exercises at home, as getting to a gym is really tricky. Again there are lots of websites and channels online and I've found some fantastic ones for MS exercises and physio which are great for people with TM.
What has been the most useful thing for you so far?
Reading, researching and connecting with others. There are some great support groups, charities, videos and podcasts out there, and this bank of information is growing by the day. And although rare - there are loads of people out there living with TM who know and understand the challenges TM can present. It's really important to feel understood and supported and know that you're not the only one, and you are not alone.
What have been your biggest difficulties?
Getting to grips with the "new and different me." My life is not the same as pre TM. I've had to adapt and change what I do and how I do it. From the mundane i.e. getting out of bed, getting up from a chair; to the life-changing - getting frustrated with not being able to do things like I used to i.e. my job, taking care of my family, feeling free to go anywhere and do anything.....
How has your social and family environment reacted? Have your social or family relationships changed?
Definitely, TM has made me a lot more dependent on my kids, thankfully they are older now, but it still makes me feel sad & frustrated and sometimes demoralised that I can't do the things I used to and have to rely on them. But on a more positive note, it has made them more independent, whereas in the "old days" I would literally do absolutely everything for them. Now they do loads more chores, pick up after themselves, are more considerate and are armed with loads more life skills.
My social relationships have definitely changed, I've lost friends but also gained friends through TM, but sometimes it takes something like this to see who your real friends are and who's "got your back" - ultimately these are the people who are worth surrounding yourself with.
What things have you stopped doing?
I don't go out and socialise like I used to. Before I was literally up for anything and everything. Now going out is a struggle & I often make plans that seem a good idea at the time but on the day seems near on impossible to accomplish!
Any outing requires me I to prepare every minor detail like a military operation i.e. how will I get there, are there stairs? Is there a toilet close by? Do I have everything I need........
I used to run my own business and was unable to continue with that, which was really disappointing.
What do you think about the future?
The future is what I make of it. Everyone in life has "limitations" and boundaries placed on them in one form or another. Life is about overcoming these obstacles.
Dr. Martin Luther King famously said:
If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.
So far, which years have been the best years in your life? What have you done during them?
Probably if I was, to be honest, my late teens and early twenties, I went to uni, travelled, had my kids, was full of adventure and optimism (but so lacked knowledge, confidence & wisdom)
Now I'm older, chubbier and wiser, but in a strange way happier and less insecure ... youth is truly wasted on the young!
What would you like to do if you didn’t have your condition?
Walk like I used to, skate, run, and ride a bike!
If you had to describe your life in a sentence, what would it be?
A crazy roller coaster ride with lots of highs, lows, dips and turns.
Finally, what advice would you give to a person in a similar situation?
Get familiar with living with TM - read, research and network you are NOT alone! Never be afraid to say NO or ask for help. It's easier said than done but try to remain positive and optimistic - find new and easier ways to do things.
