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Please help! advice needed

Hi All,

Reet! I need some serious help! Life is passing me by and i am sick of watching other people living and enjoying life. I am 33, live alone (partner left me after 5 years) and i am not working. I am soooo piggen lonely. I am fat now too which doesnt help my confidence. I just seem to have to battle everything to get anywhere. I was trying to get my nurse pin number back so that i can become self employed carrying out aesthetic cosmetic proceedures (botox, fillers etc), but that has also turned out to be a nightmare and i now have a soliciter dealing with the uni as they failed to make reasonable adjustments. I havent got the cash to do my MSc in psychology after recently getting a first class degree and one of the highest marks in the uni. Every single day i wake up and i am positive, happy and always smile - but inside i am dying . I want a job so bad but my MS varies so much day to day and hour by hour that i dont know who would take me on? I really need to do something quickly before i loose my mind. I want to make some money and no struggle, find some friends and have something to work towards. I am highly qualified and skilled but my health is just so mecurial and fatigue is very very difficult for me. Even with medication i still can go from feeling great to becoming so fatgued i could vomit at any given time. I really really dont know what to do now. My friends are getting married, having babies, going on holiday. buying nice things and i am just at home - praying for someone to want to come and visit me or go to the pictures!

Sorry to whinge but i just need to do something!! I dont know where to even start :frowning:

x x x x x x

Hi , gosh you have a lot of issues there so where do we start. Yes, I don’t go out much either, I sometimes think it would be easier if I could walk, it would certainly make socialising easier, having said that, my husband doesn’t have ms and he never goes out either. Could you join your local ms branch and you might meet people there, or for that matter, any local club. As for the work thing could you set up your own business, where you could suit yourself with hours, I don’t mean the nursing related job either, I mean something else, have to say I don’t know what. Cheryl:-)

I agree with what Cheryl has said, now is the time to look forwards not backwards. Try talking to a councillor, as it sounds as though you are still grieving and we all have to go through that stage before we can move on. Try going on a diet to build your confidence back up, try your local MS group. You will meet new people and start a new life as we’ve all had to do. It isn’t easy and it takes time but you will get there. The main thing is talk to someone, by coming on here you’ve made a start and we’re always here to listen and help in any way that we can. Fatigue is a big issue with MS, so pace yourself and you will find out what you can do and for how long and it may help you to decide what to do in the way of working.

Janet x

Please take a step back and plan where to get help and support, this site is a good start!! You sound quite dePressed n fearful, try n talk it through with your ms nurse and gp, some counselling or behaviour therapy would prOb b very helpful for you, Make sure you get out once a day even if it’s only to shop n back and talk to someone On phone or comPuter even if it’s only bout the weather! Joining slimming world could help you do all these things as well as lose weight, I’ve made sOme lovely new friends through it. Good luck x

Hi

There’s something I do which might help. It was an exercise come up with by a guy who was a knight back in the 16th century. He had his leg smashed in a battle and ended up being confined to his bed, losing his sense of identity and unable to do much.

In the exercise, all you do is look back over your day or week and notice the things that energised you, or felt like they somehow nurtured your body/soul, or where you felt like you grew as a person or where you were being true to yourself.

Similarly, you notice the things that did the opposite - that drained or de-energised you, where you weren’t being true to yourself etc. Don’t just notice how you felt at the time, but how you felt afterwards as well. Over time you’ll probably notice that there’ll be similar things that come up on both lists. The idea then is that you choose to do the things that energised you, and not do the other things.

So for example, I know that watching loads of telly can leave me feeling drained & frustrated. And I know that writing (be that creatively or journalling) feels very satisfying, or that engaging with nature somehow feels very wholesome. So now, if I’ve got a spare couple of hours, I know it’s going to be far better for me to go and write or drive into the country than it is to just watch telly.

I hope that makes sense and you find those things that draw you out and feed you.

Dan

It might help you to speak to a counsellor, especially if you are clear from the outset what you want to achieve. It is possible to find a counsellor who will see you for reduced or no payment - have a look on the BACP website.

As others have said, have a good think, make a plan and then put it into action.

Good luck

B x

All I can suggest is that you try and focus on something you like doing and are good at.Sounds like you are spoilt for choice, but 'praps from humble beginings you and your version of MS can work together and find something meaningful.

Wb

I am so sorry you feel like this. I have been there, I think most of us have. I to am over weight and depressed and I have taken the bull by the horns and joined weight watchers. I have lost 9 llbs in 3 weeks and gained a lot of new friends. My mood is alot lighter too. lol.

I am a nurse also and have had to change jobs to working nights in the community because I couldn’t be bothered with all the stress on the wards. I think this is a common problem in nursing at the moment but it made my ms play up so I had to re think.

When I was first diagnosed in 05 I went on citalapran for a while which really helped. Also there are drugs for fatigue that work quite well. I haven’t tried but you never know.

Sounds like you need a health MOT , Have you got an MS nurse you can talk to or a nice practice nurse/gp? I hope you can pick yourself up and dust yourself down and move forward with this silly disease.

good luck laura xx

Is there anyone in the chat room at this time?

You could try this apparently free service funded by NHS in some areas: https://uk.iesohealth.com/ It provides mental health therapy online. ‘Discreet one-to-one therapy is delivered in real time using written (typed) conversation, with patients meeting an accredited therapist in a secure virtual therapy room, at a time and location that is both convenient and comfortable for them’. Somebody on here (Sunny Outlook) also mentioned Silvercloud is also another The following page on the NHS website has a post code search facility to see if online NHS therapy is available in your area. Online self-referral. http://www.nhs.uk/Conditions/online-mental-health-services/Pages/introdu

Hi everyone

I am new to this forum. I was diagnosed with MS 7 years ago while pregnant with my 2nd child after my 2nd bout of optic neuritis.

I started my treatment plan on Avonex and when i unfortunately re-lapsed on this I moved on to Tecfidera. Although i have been lucky and have had no re-lapse on this i have found the side effects which are predomentaly the flushes and rash do get in the way of normal life.

After a recent appointment with my consultant they have now advised i try Gilenya (Fingolimod). I have been researching this and again the side effects dont sound very nice, the first treatment does involve a hospital stay and i have this constant worry in relation to PML.

I wondered if anyone is using this drug and if so how you are finding it.

Many thanks :slight_smile:

Hi Drummet

welcome along! You’ll get more replies if you start a new topic, at the mo you’re just replying to a post that’s 7 years old.

I was on gilenya for a few years, it was a doddle. The first pill was obviously a bit worrying because of the monitoring, but nothing happened to me so it was just a nice half day chilling with a book! After that it was totally unremarkable, I didn’t have any of the side effects. My immune system was suppressed right down, which I expected would make me vulnerable to every sniffle and worse - but I didn’t even catch a cold, I’ve honestly never been so well. Apart from the ms of course.

i stopped taking it in July, for no other reason than to find out if I’d moved to SPMS or whether it was stopping relapses; I’ve not had a relapse so it looks like I am indeed, and so there’s no meds available now. I did have the blood tests and it turned out that I am JC positive and thus was at risk of PML, but i didn’t develop it. I was seen every 6 months for bloods and to catch up with my ms nurse so I’ve no doubt that if I was ill i’d Be looked after.

i found it to be the easiest meds to be on from all of them, I’d say to you to go for it.

glyn