Sorry, this is a bit of a depressing post but i am feeling nostalgic.
Its a year now since i walked out of my nuero’s office having been told that there was more patches of inflammation on my spinal cord and it was likely to be MS. That was 5 years after the same nuero told me that the previous patch was ‘an isolated incident’. I had basically forgotten about it, had a couple of kids, resumed normal life.
I dont know whether i am P££sed off at him or grateful. Maybe with an earlier diagnosis i could have started treatment and got on top of things quicker. But then, maybe i would have chosen not to have kids. Eitherway, i have lost my faith in the professionals. Knowing what i do now having carried out my own research, my treatment was terrible but having read A LOT of stories on this blog, there are much worse cases than mine.
Anyway, this last year has been a bit of a car crash. I did eventually start treatment in July but have had relapses eitherside and have basically felt ill for the whole 12 months. I think i have actually become a bit obsMSessed and in the new year, i have resolved not to read so many research articles, forums ect. It cant be healthy to be totally consumed by this disease.
I am interested to know whether it is just me but MS (i even hate the word) just feels like the hardest thing at the moment. I know there are worse diseases out but there are not many. I dont know whether the fact that there is no known cause, but then would it help to know? i’d probably spend a lot of time thinking if only…Is it the unpredictability? as a case in point, i had convinced myself that mine would be a mild dose but my confidence wanes with every relapse / new symptom. Maybe its the fight to even be heard? It took me 2 private apointments and scans to even get a seat at the table. 6 months after a 90% diagnosis to receive treatment and i havent seen a neuro since being diagnosed. 40 mins per year for such a serious condition does not seem sufficient. My appointments are basically like speed dating. Worst of all i think though is that there is no clear path to recovery. I would risk a lot for the chance of a cure. I cant imagine what it is like to be given a cancer diagnosis and confront the prospect of not getting through it but at least there is a path to resume normal life. My 70 year old neighbour had a triple heart bipass and was on deaths door but now he is walking around fit as a fiddle. Sorry, i know this is terribly negative but i am assuming that at least some of you have had similar thoughts so would be interested to know if they tend to just pass over time? my own journey has probably been heavily influenced by covid. It delayed my LP and subsequent diagnosis. The stress could well have set off the relapses too and now the vaccine is coming and everyone is getting excited about resuming life, its just a reminder that its no longer normal life for me…
The only advice I have is to get in touch with old friends.
Covid bollocks has put paid to any meeting up (forgive my language).
However before covid I met up with the girl I met on my first day at primary school.
She met me at a lovely little cafe/restaurant opposite my house, brought her mum and dad who i remember well also her son and daughter.
It’s the awful sense of not belonging in this world due to B*****d covid.
You need to look after your mental well being sweetheart.
Have you spoken to a doctor about it?
There are some anti depressants that don’t turn you into a zombie. During my diagnosis, my lovely GP prescribed citalopram which just took the edge of the feeling of panic.
Have you got a MS nurse?
It is understandable that face to face consultations aren’t possible now but telephone consultations are.
I’m due an appointment to see my MS consultant soon but have received a letter saying it will be a telephone appointment,
It would be a good idea to put a post on this forum asking what others do regarding symptoms.
for example, incontinence we all have had experience of this and know where you should go for help.
I’m going to send you a private message so that we can have a private chat.
Youre having a rotten time, so you can have a rant and well read it and say Yeah, I know that feeling.
Having MS really is the pits. Ive had it 23 chuffin years! It took 22 to get a proper diagnosis. Ive been through the mill with 16 different neurologists…like you say speed dating. That`s a great analogy.
I too felt lost in the system and by the time I got my diagnosis, it was far too late to try anything to stop progression.
The neuro I saw last was a SUPERMAN to me. He cared, he bothered, he went all out to help. He had me in The Walton hospital, Liverpool last year for a battery of tests for a week. He found what umpteen others failed to do.
So I am now 68 and am in a wheelchair, highly dependent on others for so many things. But I am content…I know why I cant walk and wet myself (and worse). Its no use pouring over articles about this and that wonder drug and who climbed Mount Everest with MS. Thats their story and mine is mine and I can make it better by accepting it and just get on with living.
I hope some day you too, can find peace within and live your life as best you can.
If the cloud has one silver lining, maybe it is the fact that many of us have taken Covid worries largely in our stride - seriously, but in our stride - while the blithely fit and healthy world has nervous breakdowns all around us. We’re used to having a yawning chasm of uncertainty at our feet: they often aren’t. Uncertainty about health and capability, uncertainty about money and jobs, uncertainty about our life course: radical, chronic uncertainty. Of course, that chasm is always there for everyone, whether they know it or not, but some are luckier than others in having life draw their attention to it.
Life has drawn your attention to it. Mine too. And yes, it sucks. Why does MS make us feel like crap? Well, maybe because its a chronic progressive brain disease, and there isn’t anything we think or feel or do that doesn’t involve that vital organ. No wonder its effects are so various and systemic and hard to handle. And why the cognitive fatigue and tendency to low mood that is such a feature of MS can make life particularly tough. And yes, there isn’t a ‘normal’ to get back to.
I am sorry that you had such a long course to dx. As you say, it things had been different, things would have been different, for better and for worse. I’m glad you’re on treatment now. .
Basically because it’s SH**E that’s why…no thought for us at all…I feel ill every single day, as do most on here…but you have to learn to live with it and get on the best you can. Sorry if that sounds harsh, but its the way it is. It gets to me too that no one can seem to help, solve this bloody awful condition, but for now they can’t. I think you should speak to someone about how you feel, even if it’s to just get it off your chest.
Bouds I am like you. I accept it. I don’t fight. That doesn’t for one instant mean I have given up! I haven’t. It means I am not spending vital energy and time on something I cannot change. I don’t spend any time looking for miracle cures. I am in acceptance. It is a good place go be.
I have bad days. Then I have a better day. If there was a mountain in the old days, I climbed it. And whooped at the top of my lungs for having got to the top!! Now, I go round the mountain and still whoop!
Just reading all your replies and the fact that you are all out there gives me enormous amounts of relief. I have been an MS patient for 16 years with remitting relapsing MS and I am generally mobile and fine.
My only big problem is lack of mental clarity, fatigue and tendency to low mood (so nicely put by alison100). I understand that it is not that serious, compared to other people but my job is working from home on the computer so no contact even before this pandamic and that doesn’t help.
Again, I want to thank you for giving me more strength than I thought I had.
Ditto everybody above. It also complicates matters that you have small children. They take so much time and energy! That’s not to say you shouldn’t have had them, but things got easier for me once the kids got older. I’m at a point now where I’ve ditched the useless husband, the kids are on their own, and I’m still able to do for myself. I’m one of the fortunate ones, so I’ve pretty much come to terms with the way things are.
You certainly hit a chord there. I have not felt fully healthy since 1991 and there are times this really gets me down. Pre COVID “normal” it was easier to find the good bits to smile about, but pandemic and political stuff along with economic and social problems all add to the negative side of life’s equation. As I have said many times it is completely reasonable to feel hacked off and miserable about stuff , but if you can avoid becoming consumed by the bad stuff ,some things will improve. I am not for one second suggesting that our MS lesions or symptoms will get magically better but if you can find a positive spark of any kind, you might find it gives you an opportunity to smile. My personal “smile trigger” came after I was given a bird feeder by the window. Whatever might work for you, I really hope you find it, maybe a phone call or video call to friends or family. Anything that breaks the negative cycle could help.
Thanks for the replies and the PM’s. I’m ok. I think i was just feeling sorry for myself given it was kind of an anniversary since diagnosis. Hopefully in the future, it will be cause for celebration i.e. still doing ok 2, 3, 20 years on. In the meantime, it great to have the forum as whilst family and friends can sympathise…they never really know what its like and i dont blame them as i would of been exactly the same before all this kicked off. Thanks again and stay safe.x