Last reply 2 months ago
Feeling like crap

Hi everyone,
This is my first time posting and needing some advice/information or just to vent I guess. I was diagnosed back in June of this year but my first serious attack happened in January 2017 and since then I haven’t felt good at all. I had maybe 10 good days where I felt normal. I’m always in pain, fatigue stays but just changes in intensity plus all the symptoms (pins and needles, burning, numbness, brain fog) come and go but most days they stay. I just feel like crap🤨 and it really gets to me. I have 2 small kids (5,4) so it’s hard to rest but school is starting soon so I’ll have a break.
I guess I’m wondering is this how I’m going to feel forever or is it gonna get better or do I learn to live it and how do I manage this. Like I said I just feel like crap all the time, might have a good day or two or a few hours and then that’s it. I’m desperate not to feel this way or find ways to cope with this?!
Thanks everyone.

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stumbler
2 months ago

@aggiet81 , You’re still quite new to all this, so be patient with yourself.

The answer to your question(s) is “management”.

First, your pain needs to be managed. In this day and age, no-one should be expected to live with pain. There’s an article on pain here, discussing the types of pain and how to manage it :-

https://www.mstrust.org.uk/a-z/pain

Similarly, fatigue won’t go away, but it can be managed. There’s a “Spoons Theory” that MSers talk about, which explains the problem :-

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

And here’s a booklet, which provides some answers for your consideration:-

https://support.mstrust.org.uk/file/Living-with-fatigue-2018.pdf

I’d love to take these issues away from you, but life doesn’t work like that. So, I hope you find some hope here.


highlander
2 months ago

Hi @aggiet81
Welcome to the club!
You feel free to vent all you like we’ve all done it , all you’ll get back is understanding Replies and pretty good advice when you need it.
I’ve got a daughter and when she was that age I found it hard and I was ok at the time, she’s now 20 and I worry about her more now than I did then.
So I know how you feel bit you’ll find away of working it out there is always a way of managing things. Kids are pretty much indestructible we all managed it and we had it harder than them……Well I keep telling it to my daughter!
The rest of the crowd will be along soon.
Their far more enlightened than me!
Keep smiling


vixen
2 months ago

Hi @aggiet81, sorry you have been suffering so much, I know it seems really unfair. This might seem weird, but it’s good to draw on the positives. Firstly, think how much tougher it would be your kiddies were 1 and 2. You’re right, when school starts, you will be able to invest some time in being with, and understanding yourself. You have a clear diagnosis; not too long ago this might have taken decades. Now, you can make a plan and there is so much support for you out there. As said above, you are very new to this, so everything is still unfolding, mentally, emotionally and physically. I am about 18 months ahead of you in terms of diagnosis. With hindsight now, I can put my first year in terms of recovering, my second year in terms of rebuilding and restructuring. Once the dust settled at end of Yr 1, I began a diet which has been transformative for me. Starting to go into Year 3, me and husband have looked carefully at what we want the next five, or even 10 years to look.ike, regardless of MS. As a parent of youngsters, your planning will need to be in shorter chunks. Give yourself time to fully absorb the diagnosis, and do whatever you need to do to get through the day. Rest, cry a little (I allowed myself 25 minutes wallow time very day, and no more!) and find something you can do every day which you love, and look forward to. Something as small as chocolate, wine or a trash TV programme. Slowly, a sense of the new normal will emerge; for now, take care, sleep and eat well, limit any exposure to stressful situations, avoid Dr Google and stay connected xxx


peterfrancis
2 months ago

Hi Aggie

Feeling like crap on most days if not every day is fairly standard for MS.

The symptoms you have can be managed/controlled with various medications, to be discussed with your MS Nurse if you haven’t done so already. There’s no guarantees with the Meds however, they may well reduce some of your symptoms but on the other hand they may not, it’s all trial and error.

I have recently had my dose of Gabapentin increased to 5 pills per day instead of 4, has this improved my symptoms in any way?…. No, it has made me even more sleepy and drowsy than I normally am, which is sleepy and fatigued anyway.


aggiet81
2 months ago

Thanks everyone for your replies. It’s so strange for sure, it feels like a rollercoaster, hard to take it all in and actually look after myself first.
I’ll definitely look into sites. Thanks again.


manchesterms
2 months ago

Hi aggie,
I feel i am very much in the same boat as you. Diagnosed in june but havent felt well for a long time. Everyday the sensations are overwhelming, especially the tiredness& aches. I also have 2young children& work full time. I hope that as i get a bit more used to living with it, il stop being so hyper aware of how i feel. I just get on with it because i have to but feel like im dragging myself around, its such a struggle.
Its also so hard to explain to people the extent of how you feel when theres nothing to show.
Take care!

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