Last reply 3 months ago
Struggling with Day to Day Life

Hi All
So over the past few months i have felt life just a little struggle. I have tried to carry on as normal but started to feel i just cant. I feel like im slowly losing the get up and go and that my body is shutting down. All i can think is my mind is losing the plot and that i cant think straight!! Then i get a panic on which in itself does not help. I have always suffered health anxiety and question as to weather i have MS and that it could be something different. I was on Avonex and had been for about 5 years but came off that in September. Im now not taking anything. My whole body feels so tired and worn out and just a struggle to do anything. I have never really thought of having MS and just got on with it but have found myself thinking about it daily and what can really happen to you with it. I hate this time of year too cause the dark nights and cold days. I love being outside and pottering around but its such a drab at the min. Im sorry for moaning and know there are people out there far worse than i ever am. Im sorry. Im back at the MS nurse in feb so will have a chat then.
Thank you for listening and Merry Christmas to you all
Xxx

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edmontonalberta
3 months ago

@cmlawrenson

The good news is that you have been on this site for 3 years. Hopefully you have read posts to educate yourself about options to assist you with your challenges.

The bad news is that you just wrote “I have always suffered health anxiety and question as to weather i have MS”…

Do you have MS; if so, which type? Have the physicians verified this? If not, why have they been giving you Avonex for about 5 years?? And now stopped??? I am curious…


cmlawrenson
3 months ago

Yes i have known i have had it since 2011. I was taken off Avonex as after 5 years it has shown in bloods that it is no longer affective. I read about it a long but just find it hard to except that the symptoms i am having could be down to ms?
Thanks for reply


stumbler
3 months ago

@cmlawrenson , it’s not unusual for us all to feel like we’re living in a dream. I just want to wake up now! But, we also actually realise that this is real life and it is what it is.

This time of year is a bit miserable. However, Seasonal Affective Disorder (SAD) is now recognised as a condition in its own right. There’s some details here :-

https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/

You might want to have a chat with your GP about this. MS can be a huge burden to carry around on its own, so we don’t need anything else to make that load heavier. You may just need a mild anti-depressant, to pep you up a bit through the winter. Anti-depressants aren’t a sign of weakness and a fair few of us have them at part of our treatment strategy.

so, who advised you to stop the Avonex? If it was your Neuro, did they not discuss the prospect of an alternative therapy?

And, a merry Christmas to you. There’s a reason to get perked up……………


cmlawrenson
3 months ago

Im on Anti Depressants already🙈
My Neuro gave me the option to come off of it as i didnt see the point in using something that was showing no signs of working and could help someone else. He gave me option to go on something else but i was feeling good so said i would leave it and descuse what i will go on in feb as im seeing the nurse then. He said i could call him at any time if i change my mind and wanted to go on something sooner.
I will definitely ask about that SAD for sure as that may be in the background too.
Sorry to be a pain and thank you for replying.


wjgregg
3 months ago

Dear @cmlawrenson,

I was so sad to read your post. I sympathise with all you’ve got to say.

However, looking out the window as I type, I can see that it’s a beautiful day, and things always look better on days like this. I see that you have come off a D.M.T. as it was no longer effective. What about a different one? There are now so many out there, getter better all the time. As @stumbler says, what about a talk with your doctor. After all, they are there to look after us. With respect, you sound like you could use some additional care and consideration. We’re all keen to help other sufferers in any way we can, but we are not doctors. We have paid our taxes into this system, and our entitled to make full use of it. Don’t be shy!

You have a good Christmas.

Best wishes to you.

Jon


stumbler
3 months ago

@cmlawrenson , you’re not a pain. We’re all struggling with this unfortunate burden. 😉


cmlawrenson
3 months ago

Thank you


grandma
3 months ago

@cmlawrenson I was on Avonex for 23 years, it finally stopped working But when I was first put on it there was no choice like there is today. Was on the original trial, they told me rrms would become spms in 10-15 years, it took 23 years so not complaining. Was put on Tecfidera at the start of this year, seems to be working o.k. It is supposed to reduce relapses, I usually have 2/3 a tear, haven’t had one so far and we’re nearly at the end of December . It’s been great taking 2 tablets a day instead of sticking a big needle in myself once a week! Only you can make the decision, but if there is any choice for you, the current thinking is to hit it hard and fast, while you’re not on any treatment at all you’re not hitting anything. Worth thinking about?😍


cmlawrenson
3 months ago

I will definitely think and thank you for the advice. That was one of the meds that was mentioned at the hospital
Thanks


cameron
3 months ago

This is a horrible time for you. You need to separate out the issue of the MS itself and its symptoms but also – and as importantly – how you’re dealing with it. Once you’re sorted medically you can start to deal with how to manage things on an everyday basis. At the moment it sounds as though you’re snowed under with no clear idea of what to do next. Put the medics in charge of the treatment details so that you can put your energy into sorting out everyday life. xxx


lightning87
3 months ago

You know, I had a cry tonight about my MS. I don’t often cry about it as tend to just ‘get on with things’ but we will all have dark times when realisation perhaps hits. My body today felt like it was ready to just crumple in a heap on the floor. Not really experienced this before but it is likely to be my MS rearing a it’s head to say ‘don’t forget about me, I’m still here’.

Be kind to yourself, know that it’s okay not to be okay and we are all going through this journey together. We are here anytime you need to talk and never apologise.

Have a great Xmas 🙂

Xx

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