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Exhausted, lonely and scared.

Hi there

So, I am in the middle of my first proper relapse and I am shocked how hard it has hit me emotionally. I have struggled with depression in the dim and distant past and I can feel its ugly shadows creeping up on me.

It’s rubbish timing. My (much younger) sister has just got married this past weekend. The wedding was beautiful, she looked beautiful and her husband is a lovely man. I spent the entire weekend in agony, feeling miserable and exhausted, all the while plastering a smile on my face. I am so happy for her, but I feel terrible inside and can’t help feeling that I should be more… something. It has taken so much energy to pretend that everything is fine, but in reality, I am scared.

I think after the first relapse went away, I kidded myself that that was it. I did have remnants of symptoms but I dismissed them as nothing. Now with a new brain/spine MRI with new lesions in both, I can’t pretend any more. I’m 48, was diagnosed late, but know that there were many hints at this crappy condition way back in my 20s.

I don’t know what I am trying to say, don’t really know what I am asking (if anything). I am on my own, have no support near to me (I live and work in the south of the country and my entire family is in the midlands. I work very hard, don’t really have much of a social life (especially not now with no energy at the weekend) and friends I do have are all coupled up. I am scared what will happen when I can’t continue any more. I can’t pretend any more that I don’t have this crappy condition.

My friends and colleagues would be shocked to read this. I put on such a front of being fine - I don’t know how to be any different. The curse of being the very much eldest child.

I’m just so, so tired.

hi monkey girl

i understand what you are saying.

just the day to day worsening gets me down.

however on thursday me and hubby are going to see Hawkwind at the Lowry.

we have seen them every couple of years since we got together. (when i was 22, i’m now 60)

i’m looking forward to it and dreading it at the same time.

now you really ought to talk to your gp about the depression before it spirals out of control.

also if you think you’d feel better if you were closer to your family, then explore the possibility of making it happen.

it is a diabolical shit heap this ms.

you don’t have to keep on pretending that you are fine.

take care of yourself

carole x

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Hello

I think we tend to concentrate on our physical symptoms at times and forget about the emotional cost of a relapse.

It knocks the stuffing right out of you. And then you end up feeling like crap because you feel so alone with it.

Watching your sister get married to a lovely man must have been a wonderful thing. Yet, while you’re feeling like crap and in addition feeling rather lonely, it sometimes makes life harder, to watch other people’s happiness. Both joyful for them and yet sad for yourself.

Do you have friends with whom you are honest about your feelings? If there’s even one person who you could talk to about how you’re feeling right now and who would help you by shouldering some of your burden, maybe you could phone and just tell them.

I understand what it’s like to be busy working, and to live in different areas of the country from family. I’m now luckily married to a good man who helps. But we all need friends to hear us and just absorb some of the crapness about an MS relapse.

If you don’t have anyone who you can trust to look after your fears and feeling of aloneness, then talk to us. We do get it. Many of us have been in similar places in the past and we know that just being honest about how hard life is with MS, and what a diabolical shit heap it is helps (thanks to Carole for the apposite expression, that’s exactly what it is).

Sue

Hi, I think it’s about time you stopped putting on a brave face. As the eldest child myself I felt I had a responsibility to look after my younger brothers. When I mentioned this a few years ago they both laughed at me. My baby brother was a Sergeant Major in the Army by then and had had a great deal more responsibility than I’d ever had. It’s going to take a big change by you to allow other people to look after you for a change. You can start by seeing your GP and telling him, or her, how you feel. It’s exhausting being in charge all the time and having MS as well doesn’t help. Let it go. Yours, Anthony

Hi Carole

I am off to Brighton Dome … to see Joan Armatrading (Armour-plating)! My other half says Nina Samone was better?

WHO I say? Hawkwind heard of em didn’t they sing ‘Silver Machine’?

I was dxd 2012 with ms (half century birthday present) rapidly deteriorated to SPMS. Am the wrong side of 50 now.

Whatever this whole ms business sure stinks!

Hi there, you have to cut yourself a bit of slack. The wedding, relapse, of course you are going to be drained. If your body needs rest you have to listen to it.

i know everything is overwhelming just now that’s what this chronic illness does I’m afraid.

I know how you feel, my youngest daughter got married a few weeks ago. We had a lovely day, everything went well but after the meal I was so drained. Thankfully my husband noticed and told me to go up to hotel room for a rest. 15 minutes of quietly sitting with no noise going on round about me I got a second wind and managed the rest of the evenings celebrations.

The next couple of weeks exhaustion hit me but I rode it out and I can now look back on the day with lovely memories.

You will get through this but it will take a bit of time.

Be kind to yourself

Mags xx

I hope you have a great time going to see Hawkwind!

’Diabolical shit heap’ sounds absolutely right - I do know I need to do something about the depression thing. The physical stuff I could handle on its own, but the negativity is doing my head in. I do have a plan for escaping my rat race life, although don’t get me wrong, I do enjoy my job. Unfortunately it’s not one I can do anywhere else than where I am - it’s very specialised. However, MS may bring that future plan forward. So be it…

Thank you.

Yes, the wedding was lovely - I wish I could have been pain free though. I was less agile than my 83 year old great aunty - although bless her she has polymyalgia so she understands auto-immune conditions.

My best friend is a very good listener, so I do have her support. I am wary of talking and talking and talking about this bloody situation though. I get sick of thinking and talking about it - and I really didn’t want to bring down everyone to my level at the wedding. I’m too bloody self-sufficient and find it very hard to ask for help. Guess I need to change that somehow. I’ve been relatively lucky so far (in MS terms), but this relapse feels more insidious -rather than a short sharp shock, I feel like it’s grinding on and on, and I wonder if this is progression rather than relapse/remission. I know I can’t predict the future - it just feels different.

thank you for replying -I appreciate it.

The curse of the eldest child… my sister and brother are much younger than me - 13 and 20 years younger. You’re right, I need to break free of that mindset.

Thank you

Congratulations on your youngest’s wedding. Well done for pacing yourself too. I’m still learning. Words of wisdom indeed from you - I appreciate it.

Hello, I feel your pain, My M.S. is a daily battle as with us all. Please, please please, try getting some support from your local M.S. group. You would be surprised at how talking to others with the condition is a BIG help as others without M.S. really don’t understand the daily challenges. I am 45 now diagnosed relatively late for M.S. in 2016. I had a job in London that I loved but found it harder and harder to walk any kind of distance without being in pain and then a bout of optic neuroses lead to a MRI and subsequent diagnosis. If like me you are not comfortable around large groups of people, try some one on one support as being on your own in any situation can be added stress and add to your anxiety. But remember, communication is the key, don’t suffer in silence. I did and was starting to get very down and depressed. By the grace of God my mood change was noticed by some of my friends,I decided not to hide anything anymore and let them know about my condition and symptoms that affect me. I now know who my real friends are as they all try to help out in some way, whether it is bringing me some food or shopping, helping me with household chores etc. But that being said I too have to realise that they have a life too, so I have also recently contacted my local authority for a longer term care plan as remember, better to be prepared for any future relapses and have a plan in place, then to have to suffer and stress out, which is not good for your RRMS. Keep strong.

Hello again.

You replied to me with a question / comment that your relapse feels more like the slow creep of progression than something that will remit. That is something that over the next months/years, you will get used to.

Relapsing remitting MS tends to be beset by the worry / fear that it’s become progressive. The trouble is that remission implies that you will get better, recover completely from the relapse within weeks or at the most, months. And that you will notice the ‘getting better’.

What actually happens is that a relapse can go on for months. Also that remission can take a very long time, plus be incomplete. So you may never completely get back to where you were. Your system tends to, over months, compensate for incomplete remission.

I remember 10 years ago (and more), being worried that my RRMS had become SP. it hadn’t. What happens is that because you don’t totally recover each time, you do end up with ongoing symptoms that may continue to improve over time. Or not.

But, disability progression is different to disease progression.

I ended up a couple of years ago being told that I had ‘entered a more progressive phase of the disease’ (my neurologists words). But a few weeks ago, I had a clear cut relapse, which responded to steroids pretty much completely. Thus, relapsing, possibly progressive.

You will find that MS is a contrary beast, it does what the hell it likes without obeying specific rules as defined by us mere humans. Don’t be too quick to decide that it’s changed from RR to SP. it won’t do you any favours. Apart from anything, being RR means that you qualify for disease modifying drugs.

Sue

I totally empathise with you MG. What we are doing is feeling sorry for ourselves - and there is nothing wrong in doing that. Yes, I know we are supposed to go through some grieving process and arrive at a point where we accept (gracefully?) our lot. I for one have never felt anything but a massive sense of being p***** off with this whole m.s. thing. We are dumped on from a great height and our personal, social and work life etc.all suffer. How I would like to have what other people have - e.g. not worry about how they will cope each day - not to have to put up with the pain of m.s. etc. Whilst there’s nothing wrong with feeling sorry for ourselves but it mustn’t be all consuming.

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Nice one Carole.

I think “Diabolical shit heap” could be a great band name or the title for a new thread.

Good work cwC

Hi Samelia

We are roughly similar ages and I too was diagnosed late. I’m sorry that you’ve had to give up work - that must have been tough. I’m in a bit of a quandary at the moment as my best friend has suggested ‘getting some help’ - but unfortunately that wad exactly the phrase used by an (emotionally) abusive ex of mine so it makes my hackles rise a bit. I need to make that decision for myself and know that it’s because of me that I’ve made that decision, not because someone told me. (It’s complicated).

Anyway, I am taking things on board and I do want to/will look after myself. I just feel so battered emotionally at the moment, let alone all the MS symptoms, that it’s taking a little time.

I do hope you get the support you need - you sound organised!

Thank you Sue, for that very clear explanation, that’s really, really helpful. I do know that my eyesight has never got back to how it was ‘before’ and so if I over-exert myself or are somewhere unfamiliar where I have to navigate and look around a lot, i get double vision for a short period, and then it calms down. So that fits in with your description absolutely.

I will try not to hold too tightly to the labels - it doesn’t seem to make sense to do so!

Thanks, krakowian. Indeed. I’m allowing myself one more day of ‘wallowing’ and then I’m not going to. Easier said than done, but I can at least try!

Good luck to you.

Ms is pure shite.

Hate that we all have this disease and it’s really hard to forget about it and live your life when you’re in pain & if you’re like me, struggling to remember things, tripping over your own feet & walking into every bloody coffee table you come into contact wirh.

I was diagnosed in 2014, and it’s really only been in the last year that I’ve come to terms with it. I don’t think I’ll ever accept it, but I’ve found some sort of peace with it. I have days where I just have a cry in the car on my way somewhere but then I try do little things to perk me up. The other day I ordered a juicer, I get my nails done every couple of weeks… all trivial things BUT the little things add up and help.

The anxiety I suffer is mainly due to a fear of the unknown that comes with ms. I tried my best to treat this with yoga, diet etc etc but ultimately I ended up at my gp and walked away with a prescription for citalopram. It takes the edge off and I’m now able to see the best of things and try to help myself more.

There is no shame in asking for help.

Hope you’re ok and take care.

amelia x

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I hear you with the little crying bouts (I was a snot-fest this morning!) and also the little treats. I try to adopt the L’Oreal approach every now and again - because I’m worth it! It’s not easy though. I’ve had really bad anxiety since my dad died the year before MS made itself truly known. Most people would never know how anxious I am because I’m too good an actor. I must stop that though and not seeing it as giving in.

I hope you are doing OK today.