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fed up with feeling so low!

I was dx around 25 yrs ago, so you’d think I’d have got my head around it by now wouldn’t you? But even though I’ve had a pretty good run of things, even now I’m doing a lot better than many of you who have more recently been dx. So I know I shouldn’t grumble! But I don’t know how to cope with this huge feeling of loss that I feel.

I’ve been seeing a councillor for 6 months but I can’t see how it will help. It just feels as though I go a long and have a good cry once a fortnight! She says that I need to grieve for the losses that the MS has caused but I’ve been doing that for more than 20yrs. How can i ever stop grieving when things keep getting worse?

I feel like an old lady (I’m 55) who is just sitting about wait to die! It’s knowing that things can only get worse, knowing that, at best, every day of my life will be the same as today and every other day for the last few years.

The only way I can see to to stop feeling like this is to give up wanting anything to be different, to give up hope, to give up any fight I still have!

I have been offered antidepressants but if they stop the hurt then do I spend the rest of my life in a sort of blank acceptance? I can’t see that there’s any way around this.

Sorry, just needed a good moan a wallow in self pity!

hi teddie

i’m quite a newbie compared to you (dx 2008).

i try to concentrate on the good things that i still have.

beautiful skies are my thing. they are changing all the time and never get boring.

i’ve tried painting them but just now my hands are very spazzie.

​try looking for ONE GOOD THING every day when you wake up.

it may not be close to hand but you can look from your window.

this beautiful planet can’t be praised enough.

i have found that i have to really work at finding happiness and then work even harder at maintaining it.

but whilst i’m working hard on my happiness, i forget about my misery!

there is no shame in taking an anti depressant and your gp should monitor you closely whilst you are on them.

hope you wake up to sunshine

carole x

Teddie, although you undoubtedly have a bigger ‘pile on your plate’ than most people have to deal with, these doldrums you are reporting aren’t exclusive to those with MS (or any other incurable disease).

It is not unusual for anyone, even those as fit as a fiddle to complain of a pointless existence; just waiting out the clock on one’s own mortal coil. In addition to MS, you also suffer this ‘human condition’.

It is natural and indeed, it is a bitch of a thing. I hope you find a something to cling to. And don’t forget, summer is coming! This time of the year is also a bugger of a season to get through, especially if finding a reason to be cheerful proves demanding.

Chin up, soldier on, you’re not alone, stay chipper, etc…

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Thank you both for your supportive words x

I don’t feel that there’s any shame in taking antidepressants just that, for me at the moment, it would feel like sweeping the dirt under the carpet!

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When effective, anti-D medication doesn’t sweep the dirt under the carpet. It is more about giving yourself the tools to sweep the dirt it into a manageable pile and contain it, so it isn’t for ever spilling over the rest of your life and spoiling everything. OK, that’s a bit fanciful, but I’m sure you know what I’m trying to say.

Sometimes we need all the help we can get to rediscover what’s good - still.

Counselling’s useful, but it’s slow work (or it was for me, anyway). That feeling of not really getting anywhere is very familiar to me! But you are probably making more progress than you think. Most of the good work goes on subconsciously, I think. There is not reason for not taking medication as well as, rather than instead of. They won’t turn you into a zombie. I know that some counsellors are a bit sniffy about anti-Ds, but I don’t have much sympathy with that, to be honest. They should try being us! Do what feels best for you.

Good luck.

Alison

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Hi Teddie

First of all don’t apologise for unloading your feelings. We all need to do that sometimes.

All I can say is that I know how you feel and I get days like that too. I am 54 this year and I haven’t been able to work for 2 years now due to the MS.

On my bad days I do sometimes give myself a kick up the b*m, especially when I see my hubby and sons worrying about me. I get myself out of bed and put the lippy on and this makes me feel more as if I am in the real world.

It sounds like you are in a really low place, Antidepressants wouldn’t be sweeping the dirt under the carpet. Anyway, if they lift your mood then that is ok isn’t it?

I really hope you find yourself in a happier sunnier place soon.

We do really get what you are saying, honestly.

Shazzie x

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Thank you, Alison & Shazzie, your replies meant a lot to me.

I stayed away from the forum for a few days, in the hope that my next post would be more cheerful! But how ever much I try, I can’t pull myself out of these “doldrums” ( depression! ) I feel so frustrated by my lack of ability to do the things I used to enjoy and I know that there is nothing I can do about it. I know my family think that they understand how I feel but I don’t think they have a clue. In a way I’m partly to blame, over the years I have realised that even those people who are very close to you, how ever hard they try, get bored of other people’s illnesses. So I’ve got the brave face thing off to a fine art!

At least here I know that, at least some of you, will understand.

Thank you xx

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Hi Teddie, just read your post and understand exactly how you’re feeling. I’m 52 and was diagnosed 15 years ago and now I’m secondary progressive. Apparently we go through various stages, dismissal, denial, depression, grief, acceptance. I must admit like you, you’d have thought we would have got used to the idea by now. In the last year my life has totally changed, I can no longer work, can’t walk more than a couple a few steps with aids and really cannot do anything for myself without help. Try the anti-depressants I was like you and didn’t think I wanted to be a non-feeling zombie but I was advised by my MS nurse to try them - took them for 12 months and they evened the mood and made me able to cope a bit better - been off them since new year’s eve and luckily the mood is more copeable. No harm in trying. PM me if you like it sounds like you’re experiencing a lot of what has happened in my personal experience. You will cope and things will look brighter. Linda x.

hi teddie,

i understand what you’re feeling, i felt very much like you do a few years ago, i ended up barely able to talk to my neuro. dr. for sobbing, i was sent to my gp, who put me on nortriptyline, (which also assisted my other pain meds). like you i was worried about being ‘numbed’ by antidepressants, but i’m just not at all, they have simply given me back control over my emotions/perspective.

i’m just coming up to 51, 11 years post dx, i don’t believe that there’s a set amount of time in which we should ‘get to grips’ with our dx, it seems to be an ongoing process for most of us. perhaps a visit to your gp, to talk about possible antidepressant choices might help. you can slowly build up the amount of meds. i felt a little sleepy when i first started taking nortriptyline, but that wore off in less than a couple of weeks and i slowly moved back to just feeling like myself again, as i increased the dosage to the amount i’ve stayed on (3 tablets at night).

remember, there are lots of us here, who do know what it feels like,

wendy xx

Hi I’m new to this and new to ms , I also have scoliosis So unsure as to know if it’s that or ms I’ve had flair ups in the past but nothing like this latest one.,I have been in absolute agony for days to the point I can’t put pressure on my right leg and it also hurts when I reach out, can anyone help me to try and understand

Hi Teddie, your still a baby. I am 68 this year. I have no idea how long i have had MS but only diagnosed since 2016 but it took 10 years to get that and told finally i had PPMS.

I think i have had it at least since 2000 and probably a little before then.

Oh my god i could have written your post. I lost my hubby in 2017 spiralled into depression literally had to find a reason to carry on. In the end i have moved into sheltered accommodation and my house is on the market and i literally feel like i am waiting for god. since i got here i have one virus after another.

I have to find a reason to keep going. My reason is my daughters. They both still need me. So i fight hard to keep going. I also have my dog. Lucy who is my little soldier i take her out everyday on my scooter its a reason to get up and do something.

How bad are you? Are you bed ridden, or are you still able to go out perhaps in a scooter? Thats the key getting out even if its for fresh air. Just scooting out is such fun and my dog loves it. we are out everyday at least an hour.

since i moved i have too many people around me or coming to see me, its like i have gone from my house to sheltered and suddenly everyone realises in my family hey she really is sick lol.

I have a PA who helps me can take me out if i feel like it. I use direct payments even though i have to pay a little towards it, i know i can go out.

You need to find a purpose for your life. I feel your just getting up and swapping one medium for another and just sitting there thinking if ONLY… well it aint going to happen unless you make it. There are lots of forums out there with people young who need our help too. You could be an advocate for someone.

25 years is a long time. You have to look outside your life, have you a garden? I have a little area and i am turning it into a lovely area full of solar lights the residents are loving it. my little garden comes alive at night all twinkly. I still find joy in lots of things, i have my bird table and now have 3 fat pigeons who come and see me. A little warbler too.

I hate my life but love it too. I can still enjoy the stuff around me, and have been catching up on things i never watched as i used to work 60 hours a week. I have just watched 15 seasons of ER lol…i never got a chance before to just indulge in watching series, you cant when you are working all the time. If i hadnt had the MS i think i would have got a stroke as my blood pressure was out of control i was stuck in traffic all the time, dealing with stroppy students and hard work tutors lol. I look back at what i did in my life and realised well jeez i worked hard and now i am resting and enjoying the quiet if i want it.

I used to breed rare chickens yes what fun. even with MS i did that. I even used to hatch them and be a mamma to them. sadly when my husband died i had to give them to a friend as he helped me and put them away.

You need to find something to do. I write a blog too it really helps. https://livingdailywithmultiplesclerosis.blog/2018/03/04/the-beginning/

There is no time limit to grief, we have to go through the process and it takes as long as it needs to take. I lost hubby October 2017 and i still cry for him nearly every day. I dont think i will ever stop grieving for him, like you havent stopped grieving for the old YOU.

She is still there inside you, you can find her you just dont want to yet. You cant face the realisation that once you do then you have to accept the life that MS has given you. If you enjoyed challenges then treat this as another challenge in your life. Your challenge is to find a way forward. It is there your just not seeing it. What were your specialisms in life? What did you enjoy? I still do those things. I used to teach I.T. and now i can still teach others how to use their computers, and show them how to use netflix, amazon, and ebay. I help people on forums with chickens yes i am quite the expert at the old birdies.

I am supporting both my daughters through some really bad times at the moment. There always seems to be another crisis for supermum to deal with lol. They are 44 and 47 and two sides to my heart. I couldn’t bear to leave them yet, i know they need me with or without MS, and weirdly enough i have more time to cope with them now.

So much to do so little time to do it.

I was on depressants, then suddenly i have been told to stop them as they have given me low sodium levels lol. go figure. I only take 10mg. It wasnt being defeatist taking them it was just another pill to get me through the day.

Stop looking for the old you, go stand in front of a mirror the image back at you is YOU. That is who you are.

The you who your grieving for is crying out for you to accept that she is still there. You cant see her for the tears of your life now but she is there begging you to accept that fact, and release her from the chains of depression you have shrouded her with.

She wants to come out and help you but you wont let her, as you think she will just show you your vulnerabilities now, but all she wants to do is take you by the hand and show you what you really have now which is your life a good life, with family around you the air to breath, the sun to enjoy, the birds to listen too. Sometimes its all we have and all we need if we just believe and see.

Depression has stolen your identity and your joy NOT MS. You are depressed and need the support to move through it. You have been offered a way forward use it like you would a walker to keep upright, or a scooter to replace your legs. Its just another means to an end.

You monkey chatter is taking you along the wrong path because you are listening to him.

Go now look in the mirror you are still there, the life you knew the joy you had, you just have to let the old you out of the mirror.

I am surrounded by love it hugs me everyday. I NEVER had that before because i was too busy to even notice it existed.

We are all warriors on here and we all LOVE you, and understand now its up to you hun. xxxxxxxxx

Hello Pam

Welcome to the forum.

You really have had some bad luck, scoliosis and now MS. No wonder you don’t know whether any symptom is caused by MS or scoliosis.

It could be an MS relapse, have you talked to your MS nurse? (Do you have one yet? If not, try phoning your neurologists secretary and ask him/her for the contact details of your MS nurse.)

By the way, what you’ve done is to put your post on the end of an old thread from 2015 which was about a slightly different subject. (And Crazy Chick has further confused matters by replying to the original post!)

You’d get more relevant responses to your post is you started a New Thread - see the button above the list of existing threads? You give your new thread a title and then post your thoughts/questions/whatever is on your mind. You might be better off reposting your original question again as a new thread.

All the best.

Sue

Hi teddie how are you feeling now?