Hello to everyone and I hope you are as well as can be.
Just a wee update with me. I have been signed off work for another month (second one) which I hate but know I am not fit right now but hopefully one day things will settle.
Since I had my review with the neurologist and he suggested maybe thinking of stopping working and conserving my energy things have been pretty rubbish but I am keeping the good side out and hoping.
My MRI showed no new lesions meaning I can stay on Tysabri which is good.
The MS physio met myself and my husband at my last infusion and did some examination/exercises with me. Initially she thought I could maybe return to work but after spending some time with us she thinks place work on the back burner for now, has referred me to orthotics for a splint and is chasing up the situation on Fampridine which I was due to begin last year but she thinks there has been some sort of delay.
I am following all exercise the physio has given me and have been out with the rollator in our cul de sac a couple of times but I really need someone beside me just in case the right leg just buckles.
The physio said there is a lot of weakness in my right leg and when I asked if it could be progression she said it might well be and they would monitor it but it may well be from an old lesion and a wee flare up. Fingers crossed it passes and I get back to work but I am telling myself that for now I have to be off and hopefully things do settle and if not I need to adapt my life to the new “norm”.
Sorry for such a long winded rabble and thank you for reading.
I truly hope you are all ok and take care.
Mary x
Hello Mary, your’s was an interesting post…upbeat but practical in that whilst you’d love to keep working, you are keeping true to reality. Good for you sweetheart.
I had to retire very early, at 47…I’m 71 now. I have Jesus watching over and helping me.
Look after yourself chuck.
Boudsx
I don’t know how they define progression, but my personal view is that gradual, insidious worsening (which I do not have) is progression, while clear-cut permanent damage left behind by incomplete healing of a relapse and, I assume associated axon death (which I have plenty of) is not progression. But maybe I just tell myself that to feel better.
Thank you for the update, and good wishes to you. Poll’s right - you have a great attitude. You probably think that’s normal, but I don’t think it is.
Thank you so much ladies.
I have had plenty of tears initially at the thought of stopping work but now I am very much thinking if it has to be that I stop then that is what will be.
Physio just off the phone and she has asked if I feel any improvement and I was honest and said not really.
The physio said its great that I am following the exercises she sent but that it could be time that is also needed. I have an appointment with her on 1st November and she will have a good idea as to how I am.
The physio said not to rule work out yet which I certainly am not but as you say I am being realistic.
You ladies are great with your support/help always.
Maryx
Just asking your advice on this if you can help.
I have been told by my headteacher, staff and indeed my GP to continue with the sick lines for now and not to “resign” as such. Let the council decide when I should go? Does that make any sense to you guys?
Mary x
Sorry to hear things are not too good at the moment and taking some time out is a sound idea.
It might be the right time to have a chat with your Union and find out what your best options are. Having the opinion of someone working in your best interest could be useful.
Hopefully, the physio will start to build muscle strength and improves your mobility, but it’s not likely to be a quick fix.
Thanks for that!
Just heard in the past 20 minutes that they thought I was on Fampridine but I never got the tablets. They are sorting it out now.
Hopefully things improve and I will keep you all updated.
love
Maryx
Absolutely don’t resign. I do not know what the Ill-health Retirement provisions are in your profession, but if you don’t know, I think it’s time you became familiar with them and how they might apply to you. Sit tight.
Thank you so much Allison.
My colleagues and management team are great and all behind me,
I will just continue as the GP and MS team think and continue with my sick lines for now. Thanks once again to all of you, you are truly great and very caring.
Maryx
Yes, let them make the decision to retire you. Best route
boudsx
Thank you so much for your kind reply.
Things are much the same so I will do as I am told and continue with doctors/physio exercises.
Much Love
Maryx
Morning to you all.
Well another month off.
I started Fampridine 2 weeks ago and so far I have had no side effects thankfully.
I think I feel a bit stronger, well about the house but going outside is still shockingly bad with this right leg just not doing what it should.
I have the physio on the 1/11/23 and orthotics at the end of November so keeping fingers crossed and praying daily that there will be a wee bit of improvement.
Some of my family are coming over from Ireland on Friday, I think they just want to see me which is lovely but I did say I’m keeping positive and hoping.
Hope you are all well.
Take care
Maryx
Hi Mary. For sure we have to self care. Wishing you the best outcome with the physio. Please self care and take it easy. Since I got diagnosed, I realised that I must train myself to know when to stop (and for me to actually stop!), and it is ok to say NO more often. I am also learning not to compare myself to others. Take care.
Another wee update
Still off work as I am no way fit enough for school.
Had an appointment with the physio on Monday having last been with her 3 weeks ago when I had been on fampridine (3 weeks by then).The physio did a few tests with me and I then stopped the fampridine and have only just restarted them again on Monday night. I will return to the physio on 11/12/23 and she will redo the tests and see if there is an improvement when taking the tablets.
I have been given another months supply and am extremely grateful for this.
The physio thinks there has been a bit of progression and we spoke about work and we both decided that right now I am not fit for work but maybe one day?
The physio asked what I would want to be like before returning and I was honest and said school is no place for me right now as you cannot furniture walk in school amongst the other issues that are going on.
I have orthotics in the morning as the physio reckons I will need a splint made due to my knee buckling but buckling inwards if that makes sense.
I drove the car the other evening but literally around the block. I have adaptions so I have left foot accelerator,(so glad I got this done last year when the right leg had just started playing up).
Sorry for the rabble but I had said I would keep you in the loop as to what is going on with me.
Hope you are all as well as can be.
Keep the good side out as best you can.
All my love
Maryx
You are giving it your best shot, Mary. Whatever happens in the end about work,
you will have done your best. I hope you get back to the job you love, but if that isn’t possible, it won’t be from your lack of will. Thank you for the update.
I hesitate to ask this because the answer is almost certainly yes, but have you considered using a powerchair to get around school safely?
Hopefully, Fampridine provides the edge you need.
Fingers crossed.
Thanks so much for your kind replies once again, you truly are just great!
Just in from orthotics and they say the hypertension in my right leg is quite severe and were surprised I’m not in a lot of pain with it (thankfully I’m not).
They have measured me up for a knee brace and have sent me home with a splint for now.
I haven’t really thought of a powerchair as yet as I always thought if things got to a certain stage it may be time to go.
I know that sounds like a bit of a cop out but listening to hubby and my daughter they think “wait and see” for now and hopefully things settle a bit which allows me to get back even on a shorter week.
They reckon I am more content now that things have settled and I have said to myself that I’ll try my very best but if it’s not to be and keeping myself as I am for as long as I can will be the way it has to be. Time will tell and I’ll keep trying.
Thanks again
Much Love
Maryx
You are clearly nicely in control of events and “wait and see” sounds like very good advice.
Hyperextension is nasty problem, because ligaments are not elastic and don’t recover when over stretched. The good news is that a knee brace will prevent that happening and in my case, sorted out the problem after a year, or so.
This is the brace I used and was perfectly comfortable.
Fixed Swedish Knee Cage - Chaneco
Thanks so much for you reply.
This Hyperextension is something that has gradually become a nuisance and as yet no pain as such so hopefully once I get the brace things will get better in time as you say.
Much Love
Maryx
Hello everyone
A wee update. The orthotics will have my knee brace ready on January 18th. I have the physio this Monday (11th) where she will redo the baseline tests I did 3 weeks ago before starting Fampridine. I think they may be helping but it is hard to tell as I have had a few falls around the house when the right knee buckles! it is the weirdest thing as at orthotics they were surprised that I was not in pain but hey ho now its like I have a continuous cramp from the back of right leg below the bottom to behind the knee! Guess it is just par for the course.
Occupational health will call on January 4th and HR would like to
meet with me in January(discussing the 6 month stage etc)
I am just not fit but at least I’m kinda coming to terms with it…I think.
Again thanks for listening to my rabble and for always being there.
Much Love
Maryxx