As My Disease Progresses, I Choose to Grow

The losses are not possible to measure - the sports I no longer play, the job I had to pack up etc. The killer losses are not participating in the kid’s school sports day, declining social events as you know the car park is 1/2 mile away and that there are ten steps up to the venue and no handrail. My partner says things like “I can drop you off by the steps and then I’ll be back and you can hold my arm”. I don’t want that - I just want to be normal. My pension will never be used for the wonderful trips I had planned - I wonder why I saved hard for 35 years. If it stopped, I could start from that base. But it’s the unrelenting worsening that makes it such a different disease. An uncle had MND - awful disease, but he was 67 and died within 2 years. MS is MND light - 25 - 35 years of suffering. I don’t put a positive spin on having MS. It’s a bitch of a disease. When I was diagnosed there was an article in an MS magazine about a young (28) female journalist with MS who was pictured on an electric wheelchair which she operated with one finger. She had 24 hour care but insisted that “I’ve got MS, but MS hasn’t got me”. I’ve never bought into these sayings. MS does what it wants. Keeping a positive attitude is a challenge in the circumstances presented by MS. I instead challenge MS. It knows if it pushes me too far we both come to a sticky end. MS is a parasite - sucking out everything it can, but not quite killing the host. PS I’m not depressed, just a realist. Until they find a treatment to stop progression, many more will find themselves in this dreadful situation.

When MS forced my medical retirement from the army in 2017, I limped badly, but could still run a few shambling steps and I thought that if this was as bad as it gets, I'll be fine. Since then, I've progressed from limp, to cane, to rollator, to wheelchair, to implanted baclofen pump, telling myself (at the beginning, at least), that I was just going to use each adaptation until I "got better". I tucked canes and rollators out of sight in pictures, since they were just temporary after all and as such, there was no reason to preserve the memory. It's not as though anyone could have predicted how severe or fast my progression would be and I may not have listened regardless, but I wish I could go back and tell myself to do everything I could, while I could, instead of sitting around waiting until I was better. I'd tell myself that it's ok to not enjoy having to use adapted equipment, or be grateful that things aren't worse, but instead to regard these tools as........, well.........tools, that enable me to stay involved in my own life.

I'm "glad" to have the means available to adapt, but I'm not thrilled at being forced to adapt, if that makes any sense.

Maybe it's all just semantics and I've got to adapt to that too.

Great article as usual, is what I meant to say in my rambling, confusing way. I'm going to blame my non-linear thought pattern on MS too.

Ben

https://www.18disabled.com

I was diagnosed sixteen years ago with PPMS. I’ve lost a lot during that time, marriage, house career and nearly all my independence! I’m in an electric wheelchair and yes “I’ve got MS but it hasn’t quite got me”. I’ve put myself for a unique trial called ChariotMS. This is to preserve my upper body strength and enable me to carry on painting! It’s us that has to find a treatment to stop the inevitable progression of this very cruel condition. That’s why I’m doing the trial for me, you and the MS community! THEY won’t find a treatment without research. Last chance saloon!

Dear IR,

Thank you for taking the time to read and write such a thoughtful response.
It does suck. I am sorry you have had so many incredible painful losses. While I could never fully comprehend the depth of your pain, I am so sorry you have had to experience them.

This disease is indeed like a thief and we are constantly robbed. We lose experiences, abilities, friends/family, emotions, and ourselves. And as you so accurately state, it is an ongoing continuum.

I need to have this mindset for my sanity. Of course, the pain, loss, and disability get me down. Some days are just dark, but I cannot give up. Not today. Tomorrow might be different.

I'm not one for cliches, that one included. MS has me - I am just learning how to live with it one day at a time.

I m sending you my heart in hopes you know that you feel heard.
Jenn

yep...27 yrs

Bravo! Thank you for keeping it real IR. I am so tired of people trying to sugarcoat the reality of this stupid disease. I am not giving up but I also am a realist. I have primary progressive MS, so I am in a smaller percentile of folks with MS. I have a consistent decline, it’s the thing I get to look forward to. I can appreciate someone who at least speaks honestly about the struggles of this disease.

Sad to read you are in such a black pit of anger & grief. What DMT are you taking? I started with Copaxone (was in the Phase 3 CDN Clinical Trial) & while having tried Betaseron, Tecfidera, I always came back to it. It’s literally a pain in the ass to self-inject daily. Sometimes I give up & take a break, but I always go back. You might want to consider trying it to slowdown/stop your progression!

As for me, it was suspected I had MS in the months after my only child was born. But I had to ignore it all, to complete my research Master’s degree at the Western College of Veterinary Medicine, as I had just been accepted into law school. So I was a new single mom, running a Pharmaceutical research lab on campus in the day, writing my thesis nights & weekends, and trying to protect myself & my child from the terrifying machinations of an angry, much older lawyer who was determined to get the courts to find me incompetent, so he could take our daughter away from me, to be raised thousands of miles away, by his elderly mother. All because I didn’t want to give up my career to marry him & have 3 or 4 more kids for him!!

I was on a mission - MS (or anything else, for that matter) was NOT going to stop me from protecting & raising my child. But all that came with a huge cost. When my daughter reached her later teen years, my body & mind started failing.

Because of the volatile economy of the ‘90s & early 2000s, I found myself having to move across the country chasing jobs. That all came crashing down when my health really started to fail & I could no longer work as a full time lawyer. Then my Dad got cancer, seemed to beat it, only to quickly succumb to secondary bone cancer that was not detected until far too late. Two years later, my mom has a near fatal stroke, dying 7 months later.

There is just me - my daughter, who had been very close to my late mother, has distanced herself from me & has never invited me to stay with her & her little family in the 10+ years since I had to sell my house & move almost 700 km away, in an effort to find reaching work & better health support.

I’ve ended up on provincial disability benefits, almost all my things are in storage in a non-climate-controlled semi trailer on a friend’s farm, and I’m living in one room in another friend’s house. Now I’m soon going to be 60 & no longer covered by my provincial health plan for ANY DMT. I’m driving a 20 year old SUV, and there are many days I’d just like to die. But I rescued a one year old goof of a BIG street dog last year who never forgets to remind me, that SOMEONE loves & needs me.

So VERY LONG story short - Try Copaxone & get a rescue dog (or cat!!).

I am really glad I came across this post it has everything in it about the way I feel about Ms I don't have Ms my daughter does its heartbreaking watching Ms robb her of everything bit by bit it's taking everything from her what more can it do its relentless I'm so angry that humans have to suffer this way ... thank you for making me aware that I'm not alone dealing with this loss ......

Hi my name is Valerie . Thank u for ur information on ms . I’m 55 years old had a stroke in may 2021 every since then my muscles on my left side is very tense in my shoulder and when I walk sometimes my leg are so week it hard to go up and down my steps after reading ur page it got me thinking. And I’m very scared. Thank u for listening. For I have no one to talk to. I’m going to ask my doctor for a ms test . I have been feeling like this since may a lot of the things u said I’m going though..

Yes MS is a bitch of a disease.
I am 63 dgnsed at 20.
However we only have one life and we have to make the most of it .
I've divorced after 27 years of marriage.
2 wonderful sons despite Endometriosis.
3 gorgeous grandsons who are my reason d'etre.

Alison / Jenn,

Thanks for your responses (to the original post and my (IR) comment).

I’m angry and don’t disguise it. It’s just my make up. I wonder if it’s also a man thing - many of my losses are things that are traditionally done by the male in the house (fixing the roof, hauling the Christmas tree out of the loft each year……). I’ve just come back from a birthday lunch - attended by my mum (81) and dad (84). I found it demoralising that I was the only one of us three using a cane and that my parents had to slow up as we walked back to the car. We shouldn’t forget that MS can be humiliating in various ways. I don’t want to undermine anyone with MS who takes a positive approach / tackles the losses in a different way from me. I take the point that we only get one life, but I also think we need to constantly take a view (as MS progresses) on what life v existence means. We’ll all have a different view on this. My hope is that within 5 years there will be a therapy which shuts down progression (probably an anti-viral, maybe BTK inhibitors). Great progress has been made in stopping relapses, but the reality is hitting home to the researchers that progression is there from the outset and different therapies are needed to stop the tissue loss which leaves to increasing disability. Best wishes.