How are you coping? I feel I am not coping well...

Hi

Firstly my MS is nowhere near as bad as it could be, and for that I am grateful.

I am 37 yrs old; I was diagnosed last year; I have relapsing-remitting MS; I have brain and spine lesions; I am on Avonex weekly self-injection; I suffer pain, spasms, fatigue, numbness, brain-fog, arm weakness, eye pain and mild blurred eye sight (I’ve had an eye test - no need for glasses).

I work in central London, 5 days a week and have a 45 minute commute in rush hour to work/home. I have a boyfriend (who is 35 yrs old, diagnosed with osteoporosis in 2014) and not as much of a social life as I’d perhaps like but I do see people.

I feel that I have a low quality of life. Nowadays I am kept awake early mornings with neck spasms and pain. My arms hurt and I have weakness in them. I started Avonex in January this year and still get some side effects (headache & chills). I continue to work full time as I feel I should because I am young enough and - in the great scheme of things - I am well enough to do so. But I am tired and really don’t know whether I am coming or going in life. I’m working to 60-70% capacity in my job, which isn’t great.

I’ve been with my boyfriend for 9 months. I don’t know what kind of life I have to offer him because I feel that I am weakening physically and that my resolve is also weakening. I guess that I am annoyed with him because he’s 35 and still lives at home (in a beautiful, comfortable period house in a lovely part of London with his mother who is 67. He has a comfortable life, but then again he also has bad health like me). I live alone in my flat.

I live in east London and my boyfriend lives in west London and we commute to each other. In an ideal world I’d like to move in with him soon because all the commuting and constantly carrying a change of clothes across London, plus fitting him in around my job/home, is making me tired. Plus I would love to be able to take things easy at home and have some help, and to build a life with him and help him also. But us moving together is not an option right now as he is a fairly low earner. He has two part time jobs (teaching) but his wages would not allow him to comfortably rent, even if he were to split rent with me. Plus he feels that his mother needs him at home.

I know that I possibly wouldn’t have as much of a need to live with my boyfriend if I didn’t have MS. I’d be happy being independent and having a good relationship with him, taking things nice and slowly. But I am tired. I am mentally tired and physically tired. The MS affects me.

I guess that I am off-loading and having a moan. I fully appreciate that for many of you, your MS is far worse than mine. I need to buck up and get a grip. But I just don’t know what to think anymore.

How do you cope with planning life, and the thoughts and emotions behind it all, plus your expectations of others?

Thank you.

Chloe

Read Ana Claudia Domene 's book on Multiple Sclerosis and lots of Vitamin D. [amazon] This can help you and your boyfriend as Osteoporosis is - like MS - autoimmune disease - connected to vitamin d3 deficiency.

l had an appointment with Neuro yesterday. ln the waiting room was a huge poster board with lots of info on Vit d3 deficiency. Bit different when 10 yrs ago - l asked the Consultant Neuro about getting tested for Vit d3 - and he told me that there was no tests - and just drink more milk. Thankfully, l found CityAssayLabs B/ham do a postal service - and my levels were rock bottom.

And l take loads of B12 and all the B Vits. All helps with fatigue/brain function/ memory/

Just google Vitamin B12 deficiency MS - and Vitamin D3 deficiency MS.

Hi Chloe.

i was drawn to your post as I am 38 years old and work full time in central London. I commute for 50 minutes every day but I don’t find it too bad. I was diagnosed with RRMS back in 2011 after a nasty relapse that landed me in hospital. That, along with severe anxiety and depression, meant I was off work for 14 months. I spent most of this time at my parents house in Scotland recovering but was always desperate to get back to London. Cut to 5 years later and I now live just outside London, am marries and have a two and a half year old daughter. Life has gone on for me but I can tell you one thing that has really helped me to get a handle on my MS and that is meditation. I did a course back in July 2015 and I can honestly say it was he best thing I ever did. It allowed me to get back to work full time (used to do 4 days per week) as it has drastically reduced my fatigue and I have virtually no symptoms. Do you do anything to manage your own MS? If you would like more information on the meditation course then PM me. It’s honestly had amazing results for me.

I can’t offer you any advice on your relationship situation but maybe if you got a handle on your fatigue you would feel differently. All the best, Lisa xx

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Wow you are so hard on yourself. Your life without MS would be hard hun. All that work and commuting takes a toll on a healthy person never mind someone with MS.

Maybe you expect too much from yourself and your life. Life is what it is and we have to make the best of what we have. You have a home, a job, and a nice boyfriend.

I just think you are tired because well you work so hard. When was the last time you just stopped thinking oh i am tired because i have MS, and just think hell I am tired as i just work way too hard.

Why be annoyed with your boyfriend because he chooses to live at home. I was watching a programme today, homes under the hammer. There was the grottiest of flats ever being auctioned in London, and it went for 525,000 POUNDS I nearly fell off my chair lol. When the guy did the modernisation he could easily get 3,000 a MONTH RENT, omg, I thought seriously.

So if your boyfriend is on a small wage I cant say I blame him for living with his mother to be honest.

Do you share commuting to each other, or is it you always going to him etc? If so i would change it so you are sharing the commute.

Only see each other at the weekends so after work your just resting and chilling.

Can you afford a cleaner to do your cleaning once a week, which believe me really helps.

I dont see the difference with planning a life without MS as with it to be honest as we all have to plan in some respects.

I dont let my MS define who i am.

I have a husband who is iller then I am.

When we met 25 years ago we were both fit and healthy, and had a lovely life, we sort of planned, got a house, i was step mum to a few of his kids, and we muddled along, went on loads of holidays, and we both had great jobs, and between us actually we have worked 80 years lol.

Then it all changed for me in 2006, and a bit further down the line, he had COPD and slowly got worse, and eventually at 70 he retired last year. I have had MS for 10 years, and we still muddle along lol…

Life is challenging, and emotions are hard to cope with some times, more because of pain issues, but we dont expect anything from each other we just live the best we can. We had no idea that our lives would change but then I suppose thats part of life isnt it anyway.

Sorry i am rambling. I think you work hard, your tired, you need a break perhaps a small holiday, go off for the weekend do normal things together, dont expect too much from him, he is who he is, and he also has issues with his health. Enjoy the time you have together, and the rest will fall into place. xxx

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Mmm, hard innit, I know!

Been married to my chap for 44 years and like you and your`s, we were both fit, had good jobs, brought up 2 daughters…we planned to take early retirement and become camp site managers. We had a taster for a summer and loved it.

Hubby was offered early retirement and voluntary redundancy. He jumped at it. He planned to take a break for a year and then I would retire and off wed go to sunny Glocestershire, to the park wed practised on.

Then what happened/? I became ill, with what was wrongly diagnosed as PPMS…but it turned put to be something else, but equally as debilitating , incurable and untreatable. I know, the pits innit?

Now I am almost 100% dependent on hubby and carers.

So you see, life often smacks you in the face when everything is going so well.

Nevertheless, we are still together and doing what we can for each other.

I think you need to have a very open and frank talk with your man.

Get everything out in the open. See how he sees your life together and move on from there.

Maybe you need to go part time at work, eh?

Good luck hun.

Pollxx

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oh i live in gloucestershire hun. xxxx Love what you wrote. x

Hi everyone

i just want to say that it’s wonderful seeing all the support and advice offered on this site x

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Chloe,

Please Please Please, do google Dr Coimbra’s protocol on Vitamin d3. He is a leading neurologist in Brazil - and has had so much success with high-dose vitd3 on patients with auto-immune diseases. MS - Fybromyaligia- Crohns, Psoriasis and all the rheumatoid and osteo arthritis. And it is so important to catch these diseases early. For me - having PPMS for 34 yrs - l just want to feel better - but l know that to get back what l have lost is a big ask. But l certainly do feel more energised since taking vit d3 [60,000 ius daily] magnesium B Complex B12 omega 3 And Biotin B7. Lots of facebook groups out there to help you. Vitamin d for autoimmune and ms. And Biotin for Progressive MS - as l also follow this.

Be your own expert -

Hi Everyone

Thank you so much for all your advice. I agree, it is wonderful to see all the advice and support offered on these forums. MS is not easy, and I am aware that mine is mild compared to other people.

I do currently take vitamin d3 (10,000mg I think) which my GP put me on ages ago (prior to MS diagnosis) due to me being low in general, but I will look into the other vitamins mentioned here.

I spoke to my boyfriend. We share commuting across London, and have decided to leave some clothes & toiletries at each other’s homes so that we have less of a big bag to carry when we visit each other.

Thanks again. C x