Only been 6 months and i have already had enough!

Hi

Sorry this is going to be a bit of a rant. I have felt like this for a while now but didn’t want to post it as i don’t want to hear how time is a healer and i will learn to live with it; but i feel i have no one else to turn to who fully understands what it is like to live with MS.

I was diagnosed in April (age 23) and was told i that i would most likely go through the grief process and i’m wondering is what i’m feeling at the moment part of it.

At present i feel that there isn’t much point in it all, why live my life with this knowing that it is only going to get worse as i get older. Already i am finding it hard to carry on with my part time job at a supermarket, even my mum is wondering if i’m still fit enough to carry on.

I took medical leave from university when i got sixth left nerve palsy in February which of course was the beginning of my MS journey but they won’t allow me to return until i pay back burseries that were paid to me while on leave. I know i could probably fight this but i feel i’m fighting hard enough to keep myself healthy and same to fight anything else!

My main problem would be losing control of my body with not being able to pee when i want, to my ‘riverdancing’ legs and arms, to no balance, not being able to talk properly (tripping over words or just making new ones up!) and most of all is the God awful pain in my back and hip.

I am on medication for most of these problems including Rebif 44mg, vesicare 5mg, baclofen 10mg and butran patches 15mg as well as starting physio this week.

I wonder if i’m having all these problems now what the hell am i going to be like as time goes on! I just feel like screaming ‘it’s not fair’ and if one more person tells me to look at other people with MS who are getting on with their lives fine i will scream. I know i can live a relatively normal life but at this moment in time it doesn’t feel that way.

If you have read this far go u! I just need some reassurance that somebody/anybody has had the same problems accepting they have MS.

I keep hoping that this is one long nightmare that i NEED to wake up from.

Steph

Hi Steph

I’ll be surprised if anyo of us haven’t experienced what you’re feeling. It’s normal and natural, and I would also say part of the grieving process. Labelling it that isn’t meant to invalidate what you’re going through, or meant to be condascending and put your feelings in a nice little box.

Getting MS is unfair (though, obviously, anyone who says life should be fair hasn’t paid much attention to people’s lives). I was freaked out by the possibility of what might happen to me in the future. I couldn’t read anything about MS as I wanted to avoid confronting what I now hadl I couldn’t handle it. My experience also means I believe you will learn to live with it, and that there is always the choice to grow as a person and become stronger as a result. But that’s something for the future, and not for where you are right now as you begin this journey. Where you are right now is, as you explain clearly, wanting to rant & kick out against it. So do that. It may now be pleasant, but I reckon it’s an important thing to do. And we’ve been there before, and still do go there.

So be reassured that you’re in good company, and we can relate to what you’re feeling, and you’re not alone. And you never need to apologise for needing to rant.

Dan

Thank you for telling me it’s “normal” to feel like this. Should have mentioned also that tears are never far away either as when I read your reply it made me cry with relief knowing someone else has felt this way. I know that one day I will probably accept it and get on without feeling sorry for myself but that day just has not came - yet. Steph

Hi Steph,

Wise words from he funk; I was diagnosed like you when I was 23; I am now 63 and would I sooner had led a life without it? I’d be an idiot to say NO but I’ve been dealt this hand of cards so I must play them.

I will not say it’s been easy but it’s opened many doors that to one of these lucky; healthy people would not be available.

Obviously your dreams of a degree have been disrupted but I’m sure it is still possible.

All ways keep in mind MS is NOT a stop sign; its traffic humps.

Give the MS Society Help Line a ring 0808 800 8000 see if you can get help funding.

Good luck

George

Hi Steph I’ve had MS since the age of 26 and I’m 44 now, and life with it has been one hell of a rollercoaster but as George says it’s not a stop sign it’s traffic humps. You will find a lot of support here, from people that know exactly what your going through. I know my family & friends really struggle to understand/comprehend what it feels like for us that’s why this group is so good it’s like having a second family all with the same illness. Keep your chin up Sue x

Hi Steph,

I could have written your post myself 7 years ago when i got my diagnosis. My heart goes out to you.

Everyone deals with diagnosis and everything that goes with it in their own way. I was like you - it took me absolutely ages to get my head round it all. To be honest i’m not sure if i will ever come to terms with it but i have learnt to deal with it one problem at a time.

Everyone’s ms is different but i am also on Rebif 44 - have been from the beginning. I have had symptoms and am struggling to get back on top after a bout of flu but apart from that i have been pretty good. I have not had any noticable progression at all so far and even though my diagnosis was 7 years ago i know iv’e had it much longer.

I know it’s hard not to but please try to stop worrying about what MIGHT happen and get on with living your life for NOW!

HeFunk has given you great advice. 7 years down the line i can honestly say that the first year was the worst by far for me. It’s very early days for you yet and it is normal to have all the feelings/thoughts/emotions that you do. Having a good cry is nothing to be ashamed of and it’s good to let out those feelings.

This is the best place to get support/advice or just have a good moan. I wish i had found it earlier on but i was not as brave as you to read about ms and stuck my head in the sand and went into denial.(not good!)

I don’t get a lot of support from friends/family as they just don’t understand but everyone on here does and it is a lifeline to me. The support is amazing.

So as you can see - you are already doing much better than i did!

Best wishes

Teresa.x

Hi Steph,

What Teresa is saying is absolutely spot on. It’s early days for you and such a lot to take on board, try and take one day at a time and worry about things when they happen, not before (easier said than done I know) and you will get there. So many roller coaster of emotions going on in such a relatively short time and pain added on top of that, no wonder you feel as you do, we all understand on this forum so keep talking to us, believe me, talking really does help you get your head around it.

Suex

Hi Steph,

When I read your post I discussed it with my daughter because it seems such a long time ago that I was first diagnosed that I can’t really remember it. My feeling is that I have always coped superbly but she reminded me that I spent a year in a dressing gown, weeping!!! That’s not at all how I am now so something must have changed!

Everybody worries about what the future will hold – wheelchairs, toileting problems, cognitive issues etc etc etc. Let me tell you that I am one of the rare ones for whom all those things have come to pass. However it is not the end of the world, I promise it isn’t – and as I said I’m rare (!) you might never have anything more to put up with than you have now.

I know it’s a pain in the bum to be told to look at other people with MS – we’re all different for God’s sake – however there is a dot of wisdom in there – IT GETS EASIER.

Jane

Hi Steph You are obviously grieving for the lost you but you will still be able to have a great life. I am just reaching the end of my first year after diagnosis (although I have had MS for about six years). I have definitely been grieving for the me that I will never be again, having said that I have got up every day and just got on with it. You have no choice I guess. Things are tough to begin with but it does get easier. You will still be able to finish your degree, get married, have a family, travel etc. These things are all possible and many on here who were dx’d with MS when they were very young have managed all these things. Stay in touch with us we are happy to lend support, listen and provide a shoulder to cry on. Thinking of you, Teresa xx

Those of us a bit longer in the tooth have probably had more experience with going through the grieving process during our lives, and each time it becomes more recogniseable, no longer carrying the doom and devastation it did the first time around.

Before an MS diagnosis, I’ve had a child die, a divorce, and long term relationship break up… in each case, grieving follows the same five stage process, to varying degrees of strength and with relapse back into one of the stages you were supposed to have dealt with.

Steph, if this is your first brush with grieving, do a bit of internet research on the various stages, see it for what it is (a natural and necessary human response), understand that it’s likely to recur in your life for a variety of reasons, and feel empowered that it’s not just you suffering from it, it is everyone in the world at some point in their life’s journey.

As Winston Churchill once said, if you are going through hell, keep going.

Hi Steph, you`ve received a lot of very good replies. Interesting to read how others dealt with their condition.

One of my earliest memories of living life with an internal monster, was when me and my mum were in a cafe. I was quiet, shell shocked by what the future might hold. A bloke asked if he could sit at our table, as the cafe was busy. He was bald, had several facial piercings and was covered in tatoos! Mum (such a friendly soul) started chatting to him. He said he had MS…had it for 30 years…mum tried to draw me into the conversation…what did I do? I got up and hobbled out of the cafe, without a word.

That fella mustve thought I was so rude! But I didnt want to hear how hed been affected, how he`d battled…like you, I felt life would be worthless.

Well how wrong I was! 14 years down the line, I`m still here. I may use a wheelie, a commode, a hoist, but heck! I want to continue this life as long as possible.

You are still very early on in your journey. Give it time and you`ll find new ways of coping. I promise you, there IS a good life to be had, even with this monster.

luv Pollx

Hello Steph,

Please don’t think that you are in any way unusual for fealing the way you do. I certainly had very similar thoughts and emotions, especially at around the same stage you are at now. I felt as though I had gone through the first lap of having MS, and friends & family seemed to be getting on with their own lives, and I just became an onlooker. But wouldn’t we be strange if we felt any differrently really? This is earth shattering/life changing stuff so never blame yourself for not allowing yourself to grieve. I certainly found anti depressents very helpful too, as these are helping me through the tougher times. I have had MS for 25 years now and I still have the odd blip. Take care of yourself, and be aware that you are still only just finding your feet.

Best Wishes,

Moira

Hi steph, A long reply, but your post really got to me x Like most have said, how you are feeling is normal. Your comment about being tired of people tellling you to look at other people with MS who are getting on with their lives, well, this hit home for me and you have actually made ME feel normal for bringing this up, so thanks For me, right now, still going through a nasty relapse, if one more person says to me ‘the trick is just to stay positive’ I may just lose it. I have managed to stay positive for about 95% of the time, but it seems the second i have a down moment, someone seems to pipe up and say ‘chin up’. I know they are just trying to help and probably just don’t know what to say, but gah, it is driving me bananas right now, cuz I am trying my hardest and some days it just doesnt work, and I just feel rubbish about everything. Positivity just isn’t an option some times and I wish people would be more ok with that. Don’t feel you have to have all the answers now or that you should be ‘ok’ with your MS. But do think about the things you want to do with your life and find a way to do it. It might not be easy or straightforward, but it can still be done. I too was diagnosed at 23, nearly 10 years ago, smack dab in the middle of an exciting year abroad studying for an MA. Man was I mad! It took me a long time to get back but I eventually finished and glad I didn’t give up, even though at the time, I thought, what the hell am I bothering with this for. Regarding your uni not letting you back though, this is absurd. Please get in touch with your students union immediately for advice and if your uni has one, your disability support office. I now work at a uni and have lots of students with various disabilities and I would be appalled if this happened to any of them. Good luck, hugs and don’t feel bad about how you are feeling x

Oh my goodness! I did not expect the amount of replies i have received, i kinda thought you would read a couple of lines and groan wishing i would shut up!

I feel slightly over whelmed by the support, this is not saying i don’t have support of family but it’s different talking to someone who knows what it feels like to hear those words - ‘you have ms’ and what it all means.

I have grieved before so i know the stages but part of me feels like shouting at myself ‘Steph it has been six months already wind your neck in and stop whinging about it!’

I am still going through day to day with what i normally do such as work (shorter shifts though) and sleeping when i can, although i have a good excuse now! I still socialise etc i havent cut myself off from the world but sometimes it feels im in Steph’s world and no one understands.

When other people cry and complain about their problems such as fight with boyfriend or similar trival things i seriously have to bite my tongue so i don’t shout 'you think that’s a problem well wait to you hear mine! ha ha

Again thank you for all the replies, knowing that this ‘what is the point’ and feeling sorry for myself is a normal process.

Steph

Oh my goodness! I did not expect the amount of replies i have received, i kinda thought you would read a couple of lines and groan wishing i would shut up!

I feel slightly over whelmed by the support, this is not saying i don’t have support of family but it’s different talking to someone who knows what it feels like to hear those words - ‘you have ms’ and what it all means.

I have grieved before so i know the stages but part of me feels like shouting at myself ‘Steph it has been six months already wind your neck in and stop whinging about it!’

I am still going through day to day with what i normally do such as work (shorter shifts though) and sleeping when i can, although i have a good excuse now! I still socialise etc i havent cut myself off from the world but sometimes it feels im in Steph’s world and no one understands.

When other people cry and complain about their problems such as fight with boyfriend or similar trival things i seriously have to bite my tongue so i don’t shout 'you think that’s a problem well wait to you hear mine! ha ha

Again thank you for all the replies, knowing that this ‘what is the point’ and feeling sorry for myself is a normal process.

Steph

You are not alone in this we all know what your going through, keep posting we can all get through our fight with this disease together. Night god bless hope you sleep well Sue xx

Does grieving ever stop? Only diagnosed coming up to a year (aged 39yr) and since have done 10 sporting challenges (including the usual silly balance ones like competition long jump, trampolining, 100M sprint) to the harder ones (white water kayaking, 10k running road race, 26 mile cycle, NHS Sprint Triathlon) and the family ones (table tennis, badminton, learn to swim front crawl) and organised a long distance race raising money for MS Society. OK, some people call it denial or just my coping mechanism, but as with others, enjoy life, but it is at a different pace, thats all!

And yes, this is a lot less than my usual pace of life (fell running, cross country, mountain biking, long distance runing/cycling) but it is an adjustment in priorities of what YOU want from life. And ok, it may take time to adjust (having done the 10 sports I had a mild relapse) but has it been worth the pressure? My wife and children would say no but I think I would carry on as long as I can doing the activities I enjoy, just toning it down. I like to look on it as getting older and my body saying slow down a bit!

I know of one lady post diagnosis at 17 years old who went through marriage, divorce, remarriage, moved house, set up a thriving buisness, has had two children and bought a sports car (not neccesarily in this order) but people thought she was greving the loss of her independance. She reset her goals! Hope this makes sense?

Hi Steph, I know it’s been a while since your post but after reading it and everyone else’s responses I just felt compelled to say a few words. Firstly how you’re feeling is completely natural. When I was diagnosed 7 years ago I was in the Royal Navy and I thought my whole world had just collapsed. I remember spending the whole day crying my eyes out thinking my career was over, that I’d never meet anyone and like you I was worrying about the ‘what ifs’. Looking back I just think what a wombat I was and actually if it wasn’t for the MS I would never have met my husband. I have now left the Navy, not because of MS but because my 22 years was up, and I have embarked on a 3 year uni course to become an OT. If I’m honest I’m probably still in denial even now and I still do things that probably don’t help, my MS nurse shakes her head at me every time I see her, but life is for living. I’m not going to say how there are people doing amazingly well, there are but they are not you and your MS is unique to you. All I know is that I’ve had a roller coaster ride of emotions along the way. My advice to you is that if you feel like you want to cry, cry. If you feel angry go outside and scream. My anger usually manifests itself when I’m in the car on my own and I can shout obscenities! Acknowledge your emotions and go with them. There is no right or wrong way to deal with it. I’m about to start Tysabri and I’m s**t scared but one thing I did discover which has helped me loads is LDN. Google it, there’s loads of info, admittedly a lot of it is anecdotal but it works for me. I don’t know how your MS will pan out but don’t worry about the stuff that hasn’t or even may never happen. You’ll manage and there’s plenty of support for you should you need it. I wish you all the best Sarah x

Hi I appreciate you writing to me after so long. I’m still having problems accepting it although it’s becoming more real at present as I’m having my first relapse since I was diagnosised. I’m dreading the steroids again as they make me feel so ill. My main problem is that I was told that I would learn to live around my ms and it would just be in the background but I’m not finding this true. I’m finding that I’m struggling to see past the ms and how it leaves me each day. I did google that LDN and am very interested in it. How did you get your gp to sign of on it? Any other information on how you went about getting it prescribed would be very helpful. Steph

Hi Steph,

Sorry to hear you’re having a relapse, just listen to your body and go with your gut instinct. If its telling you to sleep then sleep…afternoon naps are most beneficial…even when you’re not having a relapse!

If the steroids aren’t helping or making you feel worse don’t have them. Remember its your body, your choice. I have in the past been on copaxone and Avonex, both made me feel terrible and I’m convinced the Avonex actually made things worse, so I stopped it. Do your research. I can’t tell you whats best for you but when I was diagnosed I was overweight and, being in the navy, I used to drink a lot, so I changed my diet and lost weight, cut down the booze and that helped dramatically. I take supplements too, omega 3 and vitamin D are the big ones. There’s much you can do to help yourself and actually it makes you feel like you’ve got control of your MS not the other way around. I don’t know if you exercise but that also helps. I used to be a big runner, those days are over which I find frustrating and I actually get run envy when I see people out running, but I still swim and go to the gym, it lifts the spirits if nothing else. Just getting out in the fresh air is sometimes enough. I also go for Reiki and thai foot massage. In all honesty I think I’ve become a bit of a hippy but anything you can do to bring the stress levels down will help!

Sorry I feel like I’m lecturing you.

Regards the LDN I went through an online prescription site called Emed. You need to send them evidence that you have MS. They write the prescription and send it to Dicksons chemist in Glasgow who then knock it up and send it to you. It costs £15 for the prescription which is for 3 months and £18 a month to Dicksons for the LDN. I never even approached my doctor…too impatient…but if you go to the LDN website there is a template for a letter you can give to your doctor all about LDN and you may be lucky, that way at least you won’t have to pay for the prescription. I like many others who have discovered LDN wish I’d found it years ago.

Take care Steph,

Sarah x