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reaching out

Hi everyone. I’m fairly new to the site and haven’t posted before. It’s been great being able to see the discussions and I really appreciate all the advice and support you give each other. I had my first lesion in 2017 - it was on the optic nerve - which badly affected my eye site for about 6 weeks. Luckily, there was no real permanent damage though I do get a bit of the old ‘unanchored to the world’ swinging feeling if I turn round too fast even now. I was diagnosed with CIS and encouraged to live my life as if it would never happen again. Good and bad advice because fatigue became something I really had to factor into my life - every 6 months or so I’d get 2 weeks of fatigue that floored me. As a self-employed person, the unpredictability of it all is tough. I found that I didn’t consider myself as someone ‘with MS’ so I sort of ignored these as symptoms as something I had to deal with and felt a bit of a fraud when I acknowledged how tired I was.

Just before Christmas 2020 I had right sided numbness as well as facial numbness. The MS nurse suspected a new lesion and the neurologist agreed. After the MRI in January 2021, it was confirmed that I’d had 2 lesions and I was re-diagnosed as RRMS. It was all a bit of a shock and, though I’m doing ok, I think it’ll take some processing. I know I’m lucky as it’s still relatively early stages and there’s no permanent damage so I’m counting my (secular) blessings. I realised over this week, though, that I haven’t spoken to anyone with MS about this. I speak to my husband who is very supportive and I’ve mentioned it in a work context but I haven’t spoken to anyone with a shared experience and I think I need that. Maybe it’s lockdown and Covid and the way the world is as well but I can’t shake the fatigue. I’ve pared work down to one job a week and I’ve taken time out of the postgrad studies I’m doing. But, the fatigue feels never ending.

I started on Tecfidera about 6 weeks ago. I admit I was more scared of that than the numbness to begin with because the side effects sound awful! But, I’ve been really lucky. No gastric issues at all and the spectacular sunburn of the 2nd (full dose) week has reduced to a little facial heat/reddening but even that isn’t every day. The only thing I’m noticing is that I’m bloated and have put on a bit of weight. I’m hopeful that will pass and, now that I know how to take the Tecfidera, I won’t eat as much at mealtimes. I’m dealing with the menopause at the same time and finally have the HRT stabilised that has been a bit of a battle for the past year so - as I’ve said - I’m feeling lucky.

But, the fatigue. It’s endless and, weirdly, I can’t sleep either. I’m getting bouts of insomnia where I’m awake till morning and catching 4 or 5 hours of sleep to get me through the day. I’ve tried to keep up physical exercise (I weight train with a PT once a week and jog a couple of times) but it’s been hard to do anything other than shower and dress some days. I’m used to being a busy person. I have a 12 year old and a lovely husband and I run my own small business as well as do part time academic study and I’m used to managing my work/life balance but I can’t seem to climb out of this fatigue hole. I find I’m putting psychological pressure on myself to ‘be recovered’ by now. The lesions happened 3 + months ago and I suppose I’m reaching out to ask if that’s enough time to recover or will it take longer? Does having 2 lesions at a time make the fatigue harder to recover from? I know that it took a full year to feel fully recovered from the first lesion but, and this is probably naive and a bit daft, because these latest lesions were sensory and didn’t cause the extreme disruption of the optic nerve lesion, I feel as if I should be ‘better’ by now.

Any advice or experiences you can share would be really useful. If you’re on Tecfidera and have experienced the insomnia and bloating and weigh gain - I’d love to hear tips for combatting that. If you have any advice on post-episode fatigue or experience of how long it took to reduce, that would be great to know too. If you just want to say hello, I’d really welcome that as well.

Thanks, all

Hi KathleenK, Im afraid i cant give you a time line for any symptom as everyone is different and every episode is different. Listen to your body and dont push yourself. I work all week and then weekends i dont do much at all. Im not currently on medication but im going through the menopause aswell - fun isnt it! Take care and dont fight or feel guilty if you cant do what you used to, A

Hi Kathleen,

Fatigue is a b*gger of an issue. ACT1 is right, you must learn to listen to your body, we can not always fight or push through as we might have done with regular tiredness.

Sometimes the fight and anger can add to the energy drain, we need to modify the responses we have learned over years to adapt to the “new normal”

There will still be times when the costs of fighting through are worth it but you need to make a conscious decision, evaluating the costs and benefits each time. I have been living with this for decades and I still get it badly wrong sometimes, and there are still times when my stubborn anger takes over and I push too hard, but at least I know how my body will react.

If there is any way that you can pace yourself and assess how much fuel you have so that you can back off and recharge before the consequences are too big, then you will be halfway there.

PS. putting pressure on yourself is also burning through valuable energy, although it can be tough sometimes you need to think “OK , this is how it is” and move on before trying to change something that you can’t.

All the best

Mick

Hi, thanks for replying. Even while I was writing that post, I knew that nobody could give me an answer but still felt I needed to ask. I live in hope! It’s a frustratingly non-lineal disease, isn’t it?

Ah, the menopause. I hope you’re doing ok in it all. It’s a complicated and delicate balance, again, different for everyone. I found the Louisa Newson book really helpful.

Thanks for the advice and it’s good to hear from someone going through it as well.

K

Thanks, Mick. I hadn’t thought of that. I am so used to pushing through tiredness that it feels very weird to give in to it but it’s really helpful to think of the fight as an energy drain so it’s counter-productive. I’m trying to find a better balance and have to keep reminding myself that I’m only 3 months post-lesion, that the symptoms are still flaring up every now and again (catch a slight cold - symptoms flare up. Get the Covid vaccine - symptoms flare up) and that this is my new normal.

It’s good to hear from someone who has been living with this for decades and understands the need to adapt. It helps to know I still have a future. Appreciate it.

Thanks, Mick

K

I’ve finally reached the point where I had to significantly change my routine over the last year and a half. All I can suggest is what the others have said: Cut yourself some slack and rest up whenever you need to. I was able to push myself for years, but now I wonder if I pushed too hard for too long.

without 20/20 hindsight we can never be sure. I have over done it, under done it, pushed too hard, given up too early. Hopefully we learn from some mistakes. When I finally gave up work I did wonder if I had hung on too long, but at the time it seemed like the right thing at the time. If we can learn to listen to our bodies, sometimes we will do the right thing and have no regrets later.

M

Thanks, NorasMom

I’m sorry that you’ve had to make such big changes but I hope they are positive and really working for you. I think, in hindsight, I had already started making changes because of the intermittent fatigue I was getting from the CIS but I’d forgotten what the post-episode fatigue felt like and I think it has made me panic that this is my life from now on. I’m trying to pull back a bit and know that I’ll recover and won’t always feel like this but will have to kind to myself going forward. Appreciate your words of wisdom. Hope you’re doing ok

K

Thanks, NorasMom

I’m sorry that you’ve had to make such big changes but I hope they are positive and really working for you. I think, in hindsight, I had already started making changes because of the intermittent fatigue I was getting from the CIS but I’d forgotten what the post-episode fatigue felt like and I think it has made me panic that this is my life from now on. I’m trying to pull back a bit and know that I’ll recover and won’t always feel like this but will have to kind to myself going forward. Appreciate your words of wisdom. Hope you’re doing ok

K

Thanks, Mogace

It’s a bit of a scary idea that, one day, I might have to give up work for this illness. I think some of the fatigue that I’m really struggling with might have an emotional undercurrent and that I’m just plain scared. Ain’t life grand! You think you’re being mature and doing the best thing for your mental health and dealing with the stress but, at the bottom of it all, is plain fear. Hopefully, as life reasserts itself, I’ll be less fearful of the future.

Appreciate you taking the time to share with me. I hope you’re doing ok

K

When we’re in the midst of a bad spell, it’s easy to think we’ll stay that way, since we don’t really know, but usually it does get better. My last one took 18 months before I started feeling “normal” again. If it helps ease your mind any, I was able to work for 36 years after the MS began, so with any luck you have many years to go!

Thanks for that. I’m in the middle of a PhD and I run a small business that I love so I’m hoping that such a late diagnosis (I’m 51) means I’ll be slowing down come retirement age and not much sooner. Fingers crossed. Appreciate the support. x