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Self pity

ok, I know this is probably a difficult subject, but honestly how do you deal with the self pity?

I’m a healthy 38yo, mother of 2, diagnosed 9 years ago after just 1 attack. Thankfully totally fine for the last 9 years but hit almost 3 weeks ago with a nasty relapse. I’m struggling to walk and had to resort to a wheelchair for a day out today, and it broke me. Having my 8 and 6 year old push me around was heart breaking, how do I deal with this?

im so sad right now, I don’t know what to do, I don’t know who to talk to. My husband is [removed by moderator] shared, drinking far too much because he doesn’t know how to cope. How do you do it?

My family are remote and have no idea of the everyday struggles I’m having, my friends are great but have their own lives (and I probably haven’t let them in on my struggles as much as I could) How do I pick myself up I and carry on? It’s so hard dealing with this. Knowing I will probably be in a wheelchair long term before too long. It’s not fair

hi ragen

it sure is a bum deal this ms malarkey.

don’t get too downhearted though.

just because you have use begun to use a wheelchair doesn’t mean that this is permanent.

speak to your ms nurse and ask about rehab and/or physiotherapy.

your children have shown that they can take it in their stride, mine would have been battling to be the one who pushed mum!

get a lot of me time - call up your friends and say that when they are free could you meet up for coffee/wine/gin/beer.

honestly physio is what you need to keep your legs strong.

to use a cliche, be kind to yourself.

cut down on chores, nobody ever died from wearing un-ironed clothes.

it is a stinker having ms but you have a lot going for you.

sending waves of psychic strength and a big squishy hug.

carole xx

Everyone is entitled to self pity. I am sure we have all shared that feeling over our times with the disease. A wheelchair is a means to an end. OK what if you broke your leg badly and had to use a wheelchair would you feel bad having your children push you? Its needed right now. Talk them kids are very very resilient and they understand. Make it light. Just explain that mum is poorly and at the moment just going through a little bad patch but hopefully with their help and understanding she will get better. Dont let the disease defeat you. what is the neuro doing with your relapse, are you getting help with medication, was there a reason for it, to suddenly just flair up like that, have you been reassessed more MRI etc. A relapse well it can be scary but it too will pass. Your husband head in sad. You need to get him on board. This is not the beginning of the end hun, its just a glitch like many illnesses have. You need to find out why, you need to get your neuro and GP on board and find out how to deal with it, and if needs must you need a bit of councelling. I have had this disease probably 20 years now, and still not in wheelchair full term, yes when i go shopping i have it. You could buy yourself if you have money a small folding scooter which is less scary and take it shopping with you or on days out. you can get the kids to decorate it for you. make it fun for them, which makes it less scary. Kids love to help you know. My daughter had M.E. was bed ridden for a year and her kids were amazing they actually helped her get through it. It made them much stronger adults. your family need to know ok. You need to talk to your friends and explain what is happening. ASK FOR HELP even if its just emtoional support. do you have a mum i am sure she would want to know. you have done this on your own for 9 years and they just assumed you were ok, but now you need them, so you need to take a deep breath and ring them. You can help yourself a little, do online shopping, and pace more in the house. start a rota so that everyone is on board. it can be mums recovery board, whatever you chose to call it. little rewards for the kids, and assure your husband you will be back to well nearly your normal self soon. it can take weeks, but you will get there, but you have to fight. your seeing way too far into the future. you have had to use a wheelchair once doesnt make you wheelchair bound just means you needed it at the moment. remember the broken leg you could be in one for six weeks my friend was. Now deep breath and get help. Talk to familiy, friends, husband tell them you need help. life isnt fair sadly. but it doesnt hurt to have some self pity we are only human. You have reached out to us, now reach out to those who love you. you need to talk to hubby he needs to understand that this shouldnt be permanent just a glitch. I have PPMS so i dont hve relapse my disability is ongoing and constant. I hope someone with RRMS will come and help or give you advice too. BIG HUGS. xxxx

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Deal with the self pity by looking outwards. What HAVE you got? Two marvellous kids by the sound of it. Contact your MS nurse or neurologist and off load to them.

I had this experience and you have to recognise your limits. So you can’t do “big walks”. i got to that stage and it was frustrating as all hell. Had to rely on son (not bovvered going shopping with mom), or paid carer (limited time) or partner (lived in London so not much help there). At that point, I tried Shopmobility. Ask to use an ELECTRIC chair and then kids don’t have to push. Using a wheelie ain’t the end of the world. When I got mine, I could go further and faster than I had in 10 years! Now I have an off road one and I go places I’ve never been able to.

As for the husband, sounds like he could do with counselling. Try getting him to see his GP as a starting point. For the drinking and emotional support. Often we don’t realise what the OH is going thru. They are thinking: she’s gonna die/ what will I do?/ what about the kids/ I didn’t sign up for this… And we’re thinking: WTF? whats the matter with you - I’m the one with MS here.

so he could do with contacting the carers centre - there will be one in your area and they have lots of useful info and contacts.

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Hello Ragen

Don’t beat yourself up because you’re feeling down and sorry for yourself. MS is crap and relapses come from hell to torment us. We are all allowed a decent amount of ‘why me?’ And ‘it’s not fair!’

The first time you use a wheelchair is horrible. No two ways about it, you’re going along OK for several years, yes you have MS and deal with little symptoms, but then a big bad relapse comes along and wallops you with disability.

But, I assume you are relapsing remitting, in which case, the remission should kick in and make you feel miles better. You will be back walking again all the time, just like ‘normal’. Or perhaps the remission is only partial and you end up needing to use a wheelchair now and then. You will deal with it, just as you deal with everything in life.

Are you currently on a disease modifying drug (DMD)? If not, see your neurologist and see if you can get on one. Prevent any further relapses from belting your nerves.

Your husband probably doesn’t know how to cope with his usually hale and healthy wife being, even temporarily, disabled. That makes two of you (add your children in too that makes 4!) Drinking too much isn’t going to help, the reverse in fact. It sounds like the two of you need to talk openly and honestly about how this relapse has made you feel. Scared is my bet, both of you. Scared that this is permanent, scared that this is the future, scared of all the other bits of you that could go wrong.

A sudden relapse that came out of nowhere and has caused all this trouble is one of the most frightening things to happen. You should both acknowledge that and try to work out how you are to move on and how to talk to your children about what’s happened.

Keep us posted.

Sue

Thanks all, I’m feeling the love today.

So yesterday was a tough day, not something I was expecting to experience at this point in my life. Ironically before this relapse I have just completed week 6 of the couch to 5K program and was feeling healthier and fitter and stronger than I’ve felt for a long time. Now I feel broken.

Some of you asked for some details about my condition so I thought I would start with that. As I said above I had my first attack nine years ago which left me with motor difficulties down my left side. These symptoms lasted a few weeks, honestly I can’t really remember exactly how long, it was a very odd time for me.

This relapse started almost 3 weeks ago with pins and needles down both my legs, hips to toes, including groin. This has progressed to tightening of the leg muscles leaving me pained when I walk or stand or even sit for too long. Today is my last day of a five day course of steroids which was prescribed in the hope it would speed my recovery. Honestly I don’t feel like it’s made the slightest bit of difference, which again would have contributed to my low mood yesterday.

No idea what caused the relapse, I’ve had a lot more stress over the last 9 years; 2 babies 17months apart, moved countries when the youngest was 3months old, started a new job, left it under difficult circumstances, built a house, lots of stress! The only thing new could be grief, my uncle passed away in early jan and his funeral was on the 18th, with the leg tingling starting on the 29th. I wasn’t really close to him, but the affect it had on my aunt, and by association, my mum (her sister) did upset me. It could so easily have been my dad in that coffin and us trying to cope without him.

Over the last nine years I’ve had a few appointments with an MS nurse but have been stable without any complications or residual effects so was on no medication. I have an appointment on Tuesday with a nurse to discuss this current relapse and an appointment with a neurologist in late March. I’ve been talking over the phone with the MS helpline they have here in Dorset, but haven’t actually seen anybody yet. I guess I had hoped the steroids would make me better and not feeling better at all is upsetting. I’m slightly worried that the tightening sensation I have in my legs has now spread to my lower abdomen and is starting to affect my breathing, which is scary.

My husband and I talk, but he’s just so afraid, I don’t know how to deal with that. I don’t want to tell him how bad I’m feeling because he’ll just get more scared. I do think he needs to talk to someone, I’ll suggest it. My parents are currently on holiday in the Dominican Republic, a holiday of a lifetime, so I don’t want to burden them with this while they can quite literally do nothing except worry. They are back on Wednesday, I’ll fill them in then. And my sisters have no idea what MS is, and have their own children and families and shit going on. I’m the eldest, the self sufficient one, so no one thinks to even ask if I’m ok, and I don’t offer up my bad news because that’s just not me.

I know I’m not helping myself here, I’m wallowing in my pity, but I’m scared, very very scared, and the medical help I’ve had has been very remote and difficult to get.

Im going to hope Tuesday gets me some answers when I see the nurse, and try to be kinder to myself until then. Hubby has taken the kids out for a long walk so hopefully they come back happier. It’s half term this week so it’s not going to be easy keeping them entertained when I can’t go out easily :frowning: I’m going to have a lie down, I’m very tired today

thanks for being there x

Hello

Relapses are a law unto themselves. And although you’ve had MS for years, you’ve had very little experience with relapses so don’t really get how they can work.

A relapse could possibly be due to stress, but as you say, you’ve had much more stress in your life with no MS repercussions. It could also be due to encountering a virus. Your immune system meets a virus and overreacts, causing a relapse. Or they can just happen. No rhyme nor reason.

Steroids are both a miracle worker and a curse sent from Satan. They can cause horrible side effects, both the horrible taste in your mouth, inability to sleep, extreme grumpiness versus over-emotional reactions, plus the ‘kicked all over’ post steroid reaction. But they can work brilliantly. And sometimes they just don’t help at all. Their aim is not to ’cure’ relapses, but to hopefully speed up remission. They are very hit and miss though.

Relapses will completely or partially remit regardless of steroid use. You can find they remit within days with a good reaction to steroids, or weeks, or even months. Yes, honestly, your relapse symptoms could, I’m sorry to say, last a bit longer than you hope and expect. Often you only realise a symptom is better when you wake up one day and realise ‘I’ve not felt that *** for a good few days’.

So don’t panic. What you are still experiencing will improve.

By all means, encourage your husband to talk to a counsellor, to complete strangers, to his brother / cousin / best mate / you. Talking about feelings is the only way to get the fear and worry out of your heads and on the table. So you deal with it as a unit, together.

Sue

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Ragen and RavensRay, are you the same person?

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Yes same person, I tried to change my name to something more fun!

I assumed so, as Ragen no longer exists and Ravenray as an ID doesn’t exist for as long as the original post. Maybe a case of open the box, find you’re a bit scared of what lives in there, shut it, then have a rethink.

Not a problem, people perhaps sometimes find opening out in a community harder than they realised.

Sue

Yes same person, I wanted something more fun as a username!

I thought I was having a moment and when I clicked on Ragen’s profile and it inlo showed my own, I thought there was a problem!

No sweetie, you’re no more bats than usual. I did the same the first 3 or 4 times I hit Ragens name!

It took me a good while to figure that one out!!

Sue

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My posts are all slow, they are being reviewed each time, sorry

Morning hun, it too will pass like your relapse this having your posts reviewed.

The thing is with steroids, they dont always work straight away and really need to be started in a 14 day window to be affective from the start of a relapse. I know with my hubby he lived on them and it was usually towards the end of he course that suddenly they would kick off a week after he stopped them.

Before you started were you checked for any infections (uti etc) as even an infection can make your symptoms exacerbate. So steroids wouldn’t work anyway.

I read your post. SERIOUSLY, have you read it back to yourself?

You have been through loads of stuff which could have slowly triggered this off, then you kind of slip in you have just completed week 6 of the Couch to 5k programme. I mean really… that is HUGE and could have been the straw that finally kind of broke the camels back. for anyone who hasnt heard of this its here. Couch to 5K: week by week - NHS Your body might not be in true relapse.

You say your symptoms started 3 weeks ago (3 weeks after starting this programme).

You could be simply exacerbating because you have overdone it. Pins and needles are classic. Fatigue too. It could be your body has just said enough is enough what you doing to me lol. You might have all these things pop up when you have never had them before. an exacerbation and a relapse can feel the same, just one is just a flare up of symptoms which will recede as the cause is removed, and the other takes a lot longer and may leave you with more residual stuff going on as the mylin repairs itself. BUT they can actually feel the same. this is a great bit of information explains it well.https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

Now heat for me sends me in spiral. I feel awful, can barely move, have terrible pins and needles and legs burning which can last a few days extra even a shower can wipe me out for 2 days. You have just completed week 6 of the Couch to 5k. Its a 9 week programme i believe. So basically the first week you are encouraged to walk and run 3 days a week, and by week 9 you complete 5k. So 3 days a week your body’s temperature has increased significantly, this alone can cause an exacerbation of MS symptoms which can leave you wiped out in pain, with pins and needles.

As you have had 9 years virtually fine, you may not realise that these things can be triggered by something like an exercise programme. Now it may not be that lets say you have had a relapse then the added extra of walking and running would not have helped. I think MS is so variable its really difficult to get to grips with it. I have met people with RRMS who will be fine one minute, then blam suddenly they are virtually bed ridden for weeks, then slowly they recover but are always left with something residual. Your stress over the last 9 years has been huge, moving, new house, death working kids the list is endless phew it fair took my breath away. Starting new symptoms is scary and adds stress so more stress makes more symptoms, and so the circle of MS rubbish starts. Its never ending.

I am amazed you are not on DMD to be honest.

Your husband really needs help, i would worry about him to be honest he isn’t handling this at all well. I think perhaps you might need counselling together to talk his worries through with someone there. Drinking will just make it worse. I really think he is a priority some partners just find it hard.

Once you parents are home, i wonder if you should organise a family lunch for ALL your family and this will give you the opportunity in one go to talk to everyone about how your feeling and that you need help. Never feel you are strong enough to deal with this on your own even the strongest MS Warrior needs fighting soldiers behind them to help win battles.

Get it all out in the open. Now is the time. I honestly think you will get through this, just your sheer determination will get you through this. But you need support at the moment. Dont be too hard on yourself. You need to just rest and let the drugs help you repair. You will get better but i do wonder like i say if some of it is down to all the walking, running and pushing yourself.

I think your amazing you have gone through so much in your life, like well its all normal deal with it, then decided to get healthy and take on the programme by the NHS Couch to 5k. Your obviously a very strong person, and dont like feeling vulnerable i get that hun, i think most of us will get that. It makes us feel useless and then we feel worse.

You really are entitled to self pity hun. But i honestly feel you will get through this and in a way I am kind of looking forward to the next few months to read posts from you where you have come out the other side and feeling more positive. But from an old lady on here, i really think its time you bit the bullet and got your family on board, and your sister needs to understand just how hard it is dealing with MS without support.

Good luck hun, but please from an oldie your husband really needs help right now. Big hugs. Let us hope your appointment on tuesday is productive for you. xxx

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Another fab post Sue, so agree with all of it.

Communication is a great healer better then any steroids which are the curse of the devil i saw the devastation they did to my husband. Yes they helped him but they ultimately ruined him too.

Talking is healing i think because it eases stress. Stress is the biggest and worse thing for anyone with MS.

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I can’t seem to reply to this thread any more…

Ah, that worked, for some reason the message I wrote at 9am this morning will not post, I’ll try again…

I want to hug you crazy chick thank you. I have a lot to learn it would seem and I’m pleased I’ve found somewhere with people of knowledge. I’ve tried to ignore my diagnosis for the last years, being healthy I guess I’d hoped it was a one off. Now I need to adjust to the reality.

I guess I never thought the couch to 5k program could have done anything, but maybe? I haven’t actually done any since my symptoms started, the pins and needles in my feet stopped that right away. I actually started in early Nov. But I guess the bodily stress, heat, etc could have done something? Ironically I love the heat, hot baths/showers are my life, they relax me.

I did talk to my husband last night, as he once again finished a bottle of wine and asked him to talk to his family more. His sister apparently tries to help, giving solutions when all he needs is a friendly ear. I think his mum is his best confident (besides me) so I’ll try to push that communication more. His fear comes from his grandmother who died with MS when his dad was 5. No idea what she died of, if it was MS or a related illness?

I’ll have to settle for video chats with my family this week as we don’t live close enough to do lunch. But I will, I need them to understand it’s been tough.

I was checked for an infection before starting on steroids but honestly that was a mess! My doctors refused to send it off for cultures because they dipped it and it was clear. Finally I got a sample sent in last Friday so I may see some results today. My MS nurse decided to give me steroids anyway as I was getting quite bad.

Anyway, let’s see what today/tomorrow brings. Thanks for listening xx

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Oh you’re kidding me, emojis are not allowed? I take out a few smilies and it worked?

Yup. Emojis will do that. All we’ve got is the little symbol with a face on it next to the Styles box.

That give us and a few more.

Sue

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