M.S. Wrecked and Then Enhanced My Life!
Me battling the fallout from a diagnosis of acute multiple sclerosis
So I thought ONE DAY I would write down what happened to me so here goes
I said I would write a book about my experiences with multiple sclerosis and I will! At some point! I never realised what an ordeal it has all been, but writing it down has helped me!
So the joys of M.S. started for me in May 2013. Apparently that is only recent in M.S. terms! But not for me, a bolt out of the blue, a knock on effect, well effects as you will learn!
I first just felt unwell, which is something I don't usually feel. Call it my upbringing or the other things I have been through, but I wasn't THAT unwell! I went to the doctor a few times complaining how I felt, believing I had labrynitus again where you feel a bit dizzy. I think that he just got so fed up with me coming back that he sent me for an MRI scan. When it all fell down!
But to start the ball rolling, I firstly took voluntary redundancy from a good, well travelled globally job at the end of April 2013, like many from my site, rather than have to move my then family to Puerto Rico. I had thought, ah it will be no bother to find a new role! I am good at what I do, sales, marketing, and business development AND can speak several languages fluently! Oh yes, no worries!
But then bang, M.S. hit me hard! So that doctor finally sent me for an MRI scan. Well, that was that! Diagnosis straight away that I now had M.S.! Straight away, nearly four months in Frenchay hospital!
At the time, I was happily married with two young boys, but then my world changed! Then I was suddenly disabled!
Wheelchair, then stick, but no more! (More later!)
The now ex couldn't cope that his wife was no longer the big breadwinner of the relationship, and he left me several years later, having decided to sleep in a separate room, and already with a new girlfriend! As he proudly showed me a photo! He left on our elder sons 10th birthday, as me and the boys were at my mum's farm. But it's all good now, ish! He still has the boys every other weekend and a few evenings in the week.
But good things do happen! I got to see and meet my fave band at the time, The Vaccines, through a charity called Given to Live. I met the manager of the charity whilst at a friend's birthday party, I went out for a cheeky smoke and we got chatting a few weeks before their local gig, and he said, leave it with me! And he sorted it!!! Through another now famous Bristol band, Idles, but sadly now my contact has left the band, just before they became famous! Anyhoo, Justin, the singer and main man of the Vaccines has invited me to any UK gig I could get to, but when they played recently in my hometown Bristol, it was a school night so I couldn't go! Aaarrrggghhh! The joys of divorce!
Anyhoo, got to know several famous bands since, including the Stereophonics, older band EMF! (Sorry, I loved them in my youth!). All because of my now brain condition! But fab result, would never have been able to without it!
So back to hospital time, oh it wasn't fun!
I had to be put in a sling if I needed a wee, and hoisted onto a toilet chair. No dignity whatsoever! And yes, I usually wet myself whilst being slung!
The only good bit was meeting a great friend also with M.S., Jo. We were in at the same time more or less, and I guess we became M.S. buddies! She is younger, no children, but a true friend now! For her, it became noticed when she badly hurt her leg whilst travelling in India I think. So leg in a cast AND M.S. to deal with! Poor girl! And finally Jo is getting married on the 28th September 2019, day before my 43rd birthday!
And she didn't/doesn't still have the wee issues but many of us M.S.ers do!
And the staff were and are fab! Many M.S. nurses knew and know me! They have helped with recovery and sorting out benefits payments. In fact, one helped me a lot when I was assessed for how disabled I was by a government agency, and they decided to chop my Personal Independent Payment in half! But that pays my mortgage! But yes thankfully this one nurse called Kelly helped get it back to full payment. I love her for that! She has since left, but hopefully I will see her again!
So there I was, bed bound in hospital. I hated it! I so wanted to be home with my boys and husband. I didn't get to see my boys for at least the first two weeks, they were five and three at the time. Thankfully my husband, and my mother looked after them. But it should have been me!!!
I wanted so much to walk again on my own! And I tried! But oops failed, and just fell over!
And finally, four months later, Jo and I got to leave hospital! In wheelchairs, but we were free! I had to live with my mother to start with, to adjust! But I was itching to go back home with my boys! I hated having a wheelchair, I tried often to walk, but sadly failed!
I have always enjoyed just running and have done several half marathons and other runs in the past. Then I decided I would try it again, this time to raise money for the charity M.S. Research, who I now know well, especially Abi who works there. So I trained hard, using a local gym and the park. Then the day came. My best friends participated too for me as well my mum and her partner Bryan! We ran it, walked it and I wheel chaired it a bit, pushed by my good friend Sue and my mum. But OMG I did it! My brother met us at the end with my boys, as well as Abi from the charity, with a gin and tonic for me! Much to my mother's dismay! But nonetheless I did it! I may do it again but for the charity HeadWay, with whom I am spending too much time now! Ah the joys of M.S.!
So despite my now brain condition, I can still speak 4 European languages fluently—English, French, German and Spanish. I even taught Spanish at HeadWay (more of that place later!). Fluently! Even a bit of Latin still, though not needed as much! But I did get my ONLY tattoo, so far, in Latin, after m.s. hit, saying 'I will overcome this' . And I will somehow!!! Everything! (Add picture!)
I tried to get on a teacher training course but failed! It is apparently not enough, just to speak the languages, but I naively thought that was what the course was for! So again back to square one!
Post m.s. hit, I have worked a few jobs. But mostly temporary roles. I had a good home based role for a year, but was sacked, only because I technically don't live in Canada or even Germany as that's what was needed! But oh I miss working! Not just the money, but the interaction with others aside from my m.s. But I have been advised to attend HeadWay, a brain injury charity based at the old hospital site! Oh the irony!
And now am desperately trying to find work. So that my mother will finally give me back my bank cards! Aaarrrggghhh! But grinning and bearing it for now!
So recently, mainly thanks to my mother's efforts to get me doing more things away from home, I was enrolled twice a week at the charity HeadWay, based at the site of the old hospital I was at. I attend courses to help my brain recover. Such as crazy golf, pitanque, quizzes and did host my own Spanish language training course! It's good. I got in touch with a famous ex horse rider because I read her book from HeadWay. So I spoke to her on the phone!! Was fab! She got her head condition from a nasty bang on the head by a horse's hoof! And I have support workers from HeadWay another 2 days a week! Thankfully one day a week is technically free! Many people there suffering from brain injuries. Sad but a useful place.
And now have been banned from having alchofrollic beverages AT ALL! The ex thinks am just a drunk, aaarrrggghhh! I have m.s! I like a drink or three but now even my mother has banned me from drinking ANYTHING alchofrollic! Aaarrrggghhh! I just have m.s. I don't wanna get drunk, just a couple of glasses of vino is all am looking for! So now just aaarrrggghhh! And my mother has been alcohol testing me!!! So yes aaarrrggghhh! I even had a letter from my neurologist saying a couple of glasses of vino a few times a week was fine! So just aaarrrggghhh!
I finally sent my licence into the DVLA 2 years after diagnosis, as informed I should. And it is still not sent back! I passed my test when I was 17, first time! Never crashed or bumped a car, that they would know about! But still I failed the disabled driver test! I had driven for 18 months with m.s! But no! Aaarrrggghhh! I need to drive again! I hate relying on others or taxis! So just aaarrrggghhh!
And now I am kinda seeing an older man, who I think took pity on me once. He is fab and a great guitarist! I wanna learn but being left handed, would have to get the guitar restrung! Maybe one day, but I am happy just listening to him! Alas though, he has a 'girlfriend', but hopefully not much longer! He is already sleeping in a separate room! Apparently, an older man would be good for me! But the mother stepped in and said there is no way he can move in while the boys are here! So again just aaarrrggghhh!
So now what has changed? Well accepted that officially am disabled with this invisible condition for which there is YET no cure! And yes, my actions since diagnosis have not helped. But I wanted to just 'be normal'! Aaarrrggghhh but hey in the process, lost a husband, but that may have happened anyway! And I am now friends with some of my favourite bands ever! But still can't drive or allowed my bank cards back! BUT working on it all! Oh and wishful to get a job! Within school hours! Ha, so not possible...yet!
Oh and am planning a music gig nearby soon, to raise money for the charity m.s. research, whom I am closely connected. their manager Abi! Cos 150000 Brits have it, and 2.5 million worldwide! Just doing my bit!
A few friends bands will perform for me and the cause, and a few famous bands will hopefully make me some short videos to play to the masses for their cash donations!!! Fingers crossed I can do it!
So what is new?! Nuffin! Aaarrrggghhh! But trying! On that note I want to see my 'friends' in the well-known band, The Vaccines perform and be with them again! Not just that I fancy Justin, the lead man, too much! But they are fab, new and old boys!!! Here's hoping I am allowed to do both!
But yes, the older chap is great!!!
So where am I now? Hmmm, keep you posted! Nothing has changed, things are still pants but am still seeing the older man when I can! Now have to convince my children and my mother that he is good for me! Age ain't nuffin but a number etc etc!!
Keep you posted!