Last reply 2 months ago
MS groups and forums

Do u think by going to MS specific groups and being on forums like this make your MS symptoms more prominent and you likely to complain more?

I have stop going to my local group and not been on this forum or others much I have sort of nearly convinced myself I havenโ€™t really got MS ๐Ÿ˜‚. I am still knackered, get vertigo, ache like mad and feel weird…. I have stopped all medication and most of the time I just bumble on and forget about it.

Do you think sometimes indulging in MS 2 much is u healthy?

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stumbler
2 months ago

@kitty369 , there’s strength in numbers. Along with a great deal of experience in managing symptoms.

But, you don’t want MS to take over your life. As with all things MS, it’s a question of balance. ๐Ÿ˜‰


grandma
2 months ago

Hi @kitty369 personal opinion but places like Shift she brilliant in that you can be as involved as you want to. You can dip in and out at will but you can always ask a question. I stopped going to my local group 8 years ago, used to have a lot to do with them, used to be on the committee, went to weekly yoga classes specifically for people with ms, but was dropped by them when I got Breast Cancer. Just like my family, they couldn’t deal with 2 diseases. But hurt and upset for a couple of years, but as I was going through chemotherapy, baldness, marriage break down etc., had too much to deal with it. I needed a shoulder to cry on and I found one with Shift, you can moan, cry, celebrate, whatever floats you boat. You can make friends, have a giggle, commiserate, share info and experience and if you want to, do it behind sobriquets so you needn’t tell anyone who you really are if you don’t want to.๐Ÿ‘๐Ÿ‘‚


thingy003
2 months ago

Hi @kitty369, I decided not to engage with my local support group from the start. I met with them the once but decided that it just wasn’t for me. I do know people who get a lot of benefit from them though, its just not for me.

I am a member of a FB group which is very irreverent and seems to suit me more but I skip over a lot of it and I just don’t have the time for too much social media at the moment. I had forgotten about this place to till an email just pinged in as I was looking at my phone.

I have seen a lot of people who seem to let their MS define them and I am determined that I won’t go the same way. I think it is important to try to hold on to as much of your old life as possible even though the fatigue and other symptoms may get in your way.


kitty369
2 months ago

@stumbler I think u are the worlds oldest wisest man in disguise as a young person ๐Ÿ˜† it is about balance.

@grandma shift is a good space, as long as used in the right way.

@thingy003 I agree totally with your last comment ๐Ÿ‘๐Ÿผ


dramaqueen
2 months ago

Where all walking or have walked the same road and if you need us were here but we all have choices and i agree with stumbler its not always good to dwell on MS.


kel62
2 months ago

I know exactly where you are coming from, I was going to group meetings & was involved in the MS Society, my husband & kids were as well, & it seem to be helpful, for about a little while, but then it just got all consuming & I notcied that the group was just a pity party g I did not want that, I wanted my kids to see that no matter how matter what this disease threw at me, would never give up. They were 12 & 13 by this time. And as time went on I found my balance between being a person with MS & a super Mom, lol. Ive always believed that MS is a beast that has to be kept caged & there are times, well that the beast just gets loose & just reaks havok & I hate those days, weeks, or months it takes to control or get handle on it & I’ll do whatever it takes to get that MS beast caged again. If that means groups then of course that’s what I’ll do. I’ve found one on fb that I really like & I have a couple of online friends that have been friends for over 15 yrs now! We don’t just talk about MS, in fact we rarely talk about MS, lol, but it’s so nice to know that I’m not alone out there & that I can hit a few keys & find 1, 2 or 700 people who know exactly how I feel! You’ll find your way. We all have Good luck & God Bless ๐Ÿ˜Š๐Ÿ’œ


kadi
2 months ago

I have had MS for over 30 years now and I think it is so important not to let it define you or your family. You will find the balance that is right for you – live it – enjoy it.


watsoncraig
2 months ago

Being here does not make your symptom more prominent, it makes you more aware of what is MS related and what is not


thingy003
2 months ago

@kel62 I really liked your comments there. I am determined that I will not let my MS impact on my childrens’ lives.
Now I realise that so much of that is actually out of my control but I am going to be strong for them. Always.


smack
2 months ago

All I can say is be careful with no meds. MS is a creeper. There is no cure. I donโ€™t think that it ever disappears. Unless you had a misdiagnosis then you need to stay on guard against further problems.


kel62
2 months ago

@thingy0003 Well the hard part of that thingy was, it was going to impact their lives it was just up to me on how it did. I tried my very best for many years not to let them see me at my worst, but I wasn’t always successful & I realized later after talking to them that was okay. I still sucked it up, pain, wheelchair & all & attended every school function, field trip, sometimes at my expense on spending a few days down, but definitely worth it. Our kids see more than we think & we should talk to them about what’s going on to make sure they’re not scared & know they’re not going to lose us. I know for me it was the hardest thing to do & I’m so thankful I had my husband there for support the whole way. My kids are now 37 & 35 & so loving & compassionate to others & still so helpful to me. God Bless


katrinaf93
2 months ago

@kitty396 – YES! I’m nearly thrive off it. Obsessed. Googling constant. In the toilets at working running a pen up and down my foot to test sensation, standing on one leg to see if I can balance etc etc. I totally agree and get where you’re coming from.


dominics
2 months ago

@kitty369 You make some v interesting points.

When I was diagnosed 26 odd years ago a pharmacist that I was working with who was much older than me gave me some advice. “Stay away from the MS Society as they are all wheelchairs and nappies. V. depressing.” Definitely a grain of truth in there.

I intentionally ignored my MS for a good 15years. But then, working in the pharma industry, friends that do so, friends that are scientists and doctors etc I was really confronted with my denial. I got onto Beta-interferon as it was the best there was. Due to the growing understanding back then of the increase in neutralising antibodies to it that reduced the efficacy, I went onto Copaxone but try as I might I only lasted about 3 months as the injection site reactions were intolerable.

I was steered onto the first big Tecfidera trial and spent the next 9 years on that.

Only when I engaged with the community – patient and research – did I realise that I had been missing a trick regarding early and aggressive intervention.

Your remark about being more aware/sensitive to symptoms is interesting and one that I have gone to and fro in my head with. I ‘think’ I do notice them more now that I am more aware of them. I spent years pushing through fatigue just thinking it was normal to feel exhausted the entire time. I started a company in 2004 and sold it in 2008. It was the hardest work I have ever done and I spent a lot of the time functioning on autopilot. I feel fairly safe in saying it was a major contributory factor to the breakdown of my marriage. I was often an angry, intolerant and snappy bastard at times, mostly because I was so shattered. My daughter tells me that I am far more chilled now.
The big hit came when I was doing my BA – I was cycling into Oxford every day from 10 miles away and thought nothing of it (much quicker than driving) but then collapsed asleep in the library trying to write. My fatigue had finally said that enough was enough. My study and research were being compromised and that made me go humbly to my nurse of 15y who tald me it was the clue to wind back. Something I have done a lot.

It certainly is more present in my life. I don’t let it define me and I rather object to people who lead with it, or any medical condition. It is as if they feel it adds an important dimension to them that they lacked before.Y ou are you, you are not MS.

BUT, MS is a sonofabitch and cannot be ignored. Definitely advise going on the best treatment you can, having a great neuro and if not changing. You have the power to ask your GP to refer you to a neuro of your choosing. If I didn’t have Oxford – a research centre of excellence – I’d be in London despite the schlep and expense.

Striking a balance is tough. Think of it as being the best you can be for the people around you, My decisions are guided by that as much as for me these days.

Chin up. Illegitimi non carborundum.

Dominic


dominics
2 months ago

BTW – I see you are in Sheffield. Lucky you as it is another centre of research excellence. You will get good and up to date advice there.

I did an MSc in Sheffield a few years ago but couldn’t go there as I was on the Tec trial in Oxford. The drug co. had to pay for my train tickets every 3 months so I could attend the clinic. A free trip home I suppose.


cameron
2 months ago

Such wise words from @dominics. Soon after diagnosis, I was in M and S and saw representatives of our local MS Society lined up in their wheelchairs carrying begging bowls. I’m afraid I hurried on past. I’ve never wanted to be part of MS locally because it would feel like an invasion of privacy – I know that sounds daft, but it’s how it is for me. I come on this site, I read the Barts MS blog every day and I am punctilious about connecting with the hospital, MS nurses etc. Other than that, I refuse to let MS more into my life. The time may come when that has to change: until then, I concentrate on everything else.


rivka
2 months ago

I, too, avoided the MS pity support groups for awhile but I finally joined up and Iโ€™m really glad for a reason I havenโ€™t seen anyone mention yet. This group, mostly old timers who know all the neurologists and nurses in our community, also know the latest important news. They told me about a political fight brewing that I had no idea about, which affected me greatly. I was able to switch specialists this week and I see the new team next month. They also told me about some benefits I could file for. Given that Iโ€™m also working in a new language (think first grader trying to understand the adults conversations) this alone is worth attending. But flow of information might be better at other centers where all of you are. And less language barriers. Just my thoughts..


rmdaniels
2 months ago

Sometimes I feel so alone with my MS. Even though I’m with people every day, I still feel isolated by all the junk clogging up my brain from this new and uncertain disease. I talk to people about my MS because, gee, I don’t have anything else in my life as interesting to learn about I guess. Is that sad? I’ve always been a very open person, but I think I won’t think or talk about it too much after its not so new to me. Like many of you others, I don’t want pity, just understanding. ๐Ÿ˜Š


kitty369
2 months ago

Interesting and varied perspectives….
I feel like a have changed so much since having MS in a good way, I am clearer about who I am, what I want and I define myself through things I value not a job title or where I live…. I am kate husband to Luke with 2 teenage boys and 2 many animals to count, I love nature, value kindness and like a simple life.
Lovely to hear from u!


nutshell88
2 months ago

@kitty369
Iโ€™ve been trying to believe it all my life
Trying to convince myself its not ms its stress and distact myself now drs say might be marfan syndrome after 14 years worry about MS


rogersouthall
2 months ago

Kitty, it is hard sometimes to get a balance, I am not in denial and have, like you, stopped all drugs and have never been to MS groups as the first time diagnosed I was taken to one and came away feeling depressed !!! I take CBD oil and generally lead a normal life with the odd tired days and like yesterday , a fall outside, quite embarrassing, I sometimes think I am doing better than I actually am but when I read my blogs I sometimes realise that this is not the case. This really is the only site I come on and skip past the deep questions about drugs etc. I wish you luck in your approach, take a read of my blog and give me your feedback, I would love to hear it
http://www.wholesorts.com


strictlysoca
2 months ago

Hi @kitty369 I find that shift is generally quite positive but know what you mean. Iโ€™ve only just started meeting other MSers through Shift. Itโ€™s been great. Weโ€™ve got a meet up on Sunday 7th April in Sheffield if you are interested.

I find talking to people with similar attitudes and MS is affirming but talking to those who think that Boris Johnson should be PM and believe that MS is pure suffering is a drain. Perhaps Iโ€™m a little harsh and Iโ€™m more well than them but itโ€™s what you make it right?


grandma
2 months ago

@kitty369 my daughter is 40 this yr, quite frightening isn’t it, all animals welcome in my house, looking forward to the end of hibernation so I can begin feeding my resident hedgehog again (dogs wonder every night in summer where mum is going with that interesting bowl of cat food, they eat dried!)๐Ÿ˜œ

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