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Patients Multiple sclerosis

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Carenity Member • Community manager
Posted on
Good advisor

Hello everyone,

MS can affect everyone differently. But how to cope with the emotional challenges of having a disease like MS?

The Multiple Sclerosis Society UK has made a booklet covering this subject. You can find it here.

All the best,

Marina

Beginning of the discussion - 27/01/2015

Living with the effects of MS
Carenity Member
Posted on

It's hard and I'm working through coming to terms with things. I've been in a major rut the last 18 months or so and ended up depressed and socially isolated. I'm getting councilling now and putting some structure back into my life to deal with the social issues. Things are improving and thankfully my wife and kids give me all the reason in the world to sort myself out. I now focus on what I can do, rather than what i can't do and it is making a big difference.

Living with the effects of MS
Carenity Member
Posted on
Good advisor

Hi Stratto,

I really applaud your "new" approach to dealing with your MS re: focussing on what you can do rather than what you can't do!  Although only formally diagnosed last day in Dec '13, have probably had this since 1978 although totally unaware of it until probably around 2006 and even then was in complete denial +/or put my varying and fluctuating symptoms down to anything but MS.  I too have gone down the route of "mourning" who I used to be (the things I used to be able to do) and who I am now and the limitations I now have but trying to be as proactive and positive as possible, including finding a Neurotherapy Centre about 50-60 mins from where we live and although have become a "member" today, awaiting a physiotherapy assessment next week before I can actually start "using" all its' resources.  I too have found my loved ones (family and friends) are soooooooooo invaluable in keeping me motivated and would literally be lost without them.  Please keep up the good work!!!!!!!!!!!

Living with the effects of MS
1

Carenity Member
Posted on

I have had Ms since 1999 and I have coped so far with what it has had to throw at me, it has been really hard at times but I have got through it. Recently though things have started to change in a strange way. My head feels like it's all muddled up, I can't think straight, I have to think about the simplest of tasks more, I can't be bothered with things and I don't want to see anybody. all I want is to shut my door and keep everyone away? My hands are trembling more and I am getting slower and slower! I am so tired all of the time. This has been a gradual build up of things. I have RR Ms but I'm getting worried I may be developing into the next level! 

Living with the effects of MS
Carenity Member
Posted on
Good advisor

Hi Joflo35,

Although I am no expert by any means, it does sound like you have detected "changes" in your "usual" MS......are you able to telephone or e-mail your MS Nurse?  Everyone's MS is different and think that is why it is so important for everyone to really know "their MS" in order to identify any changes in your symptoms that may indicate possible further investigation.  If you can't easily access your MS Nurse, perhaps try talking to your GP or an MS helpline?  Has anything changed recently, I.e. any possible infections, emotional upheavals etc as these can often exacerbate symptoms.  Your MS sounds like it has usually been quite "stable", in other words, it hasn't "changed" for a long while - therefore I really do think you need to see/talk to a health care professional about this (my MS has from the beginning, usually changes from 1 hour to the next, but I'm now used to this and try to act accordingly).  Your "new" symptoms sound like "brain fog", which can be so scary (!), tremor and fatigue - frequently experienced MS symptoms (I too have these).  I'm "here for you" if you want to talk publicly or privately but really recommend you talk to an MS expert.  Hope all gets better - I hope it helps to know that you are not on your own with this.  Best wishes, Ann.

Living with the effects of MS
Carenity Member
Posted on

All that Ann says is soo true, each MS is so different, but hear her and talk to your GP. It is good to feel support Ann, thanks.

Statto I aplaud your attitud. That is something that is taking me time, to come to terms with everything. I have two close friends that have cancer and with chemo and everything it sometimes make me think I'm not that bad, but then the fogs come or the fatigue and I curse everything cause I would love to be doing normal stuff like normal people...

Living with the effects of MS
Carenity Member
Posted on
Good advisor

Hi Ganganmz,

I certainly feel like I an empathise with you as I too so frequently vascillate (go from one extreme to another) regarding my MS.  Although I am fortunate in having a somewhat "mild" form of MS, have probably had it since about 1976 although it really didn't start to present extended symptoms (mainly an overwhelming fatigue, brain fog/memory problems) until about 8 yrs ago.  I have had daily symptoms for about the last year and they can often change from hour to hour, which at least does give me some daily respite for varying periods thank goodness.  My biggest problem, I guess, is the unpredictability of it, for example, after delivering a 1st aid training session and beginning to drive home, noticed I had double vision (optic neuritis in left eye) so had to drive with this eye closed until it resolved, luckily only after 5-10 minutes.  Muscle spasms/cramp come an go (with varying pain intensity) affecting all my limbs and intercostals and can last from all day to a few minutes/hours - likewise my cognitive ability can range from full function to not being able to process/understand, especially. verbal information.  I'm really trying to "go with the flow".....do what I can when I feel I can and conversely not do things when I don't feel up to them but not ever sure if this approach is actually effective or not - my MS seems to "have a mind of its' own"!  Hope you are ok and I'm here if you ever want to "talk". Ann x

Living with the effects of MS
Carenity Member
Posted on

Hi Ann

Thank you for your reply, I have now phoned my Ms nurse and am waiting for a call back to discuss things.  Things have been hard recently and I have been in so much pain which in turn gets you down. Like you said I have been quite stable in my condition but now things are changing quite quickly and its really affected me, both emotionally and physically. I will have to wait and see what the nurse suggests. Thank you for your support, it's nice to know that there are people out there just like me! I talk to my family and they are great but I think that you can't fully understand the issues unless you feel them yourself xx

Living with the effects of MS
Carenity Member
Posted on

Thanks for the various comments. I try to stay focused on the positives but I of course have my bad days. I'm having a good spell physically which of cretain lu helps but by shifting my mind set I feel so much better. I'm me again. I genuinely haven't felt like this for a few years, I'm gradually coming to terms with things and most importantly I'm not letting the MS define me. 

Keep on fighting everyone!!

Living with the effects of MS
Carenity Member
Posted on
Good advisor

So glad to hear Joflo that you phoned your MS Nurse - also soooo hoping she will be able to do something to help!  I think one of the hardest aspects of having MS is trying to stay "me" although I know I am certainly not the same person I was before my symptoms became so darned blatantly obvious.  There seem to be so few times that I feel even close to having the same energy levels and physical ability that I used to and my biggest cognitive problem is with processing/understanding oral information (as well as "misplacing" so many things and am still look for 1 of our cordless phones that I must have put down somewhere about 6 months ago!!!!!!!).  Like Statto, I am really trying NOT to let my MS define me but with daily, varying, symptoms - also although I can no longer "separate" myself from my MS or deny it (which I did for years because it seemed to "go away") it now appears it is now a part of me and hopefully trying to work more with it and being as proactive as possible.  Just had my 2nd group physio session at a Neurotherapy Centre (whose members are mainly MS, Parkinsons and others with neurological issues) as well as seeing a Holistic Therapist (since last September every few weeks) who uses massage with aromatherapy oils and Reiki.  Initially was prescribed baclofen for the muscle spasms, but this appeared to make them worse, so now on diazepam (just 3 mg 3x a day) and also use naproxen if/when needed but really not sure how effective these are but does appear to help a little bit, at least for a few hours.  I think we all need to stay determined to fully embrace every single day and just try to listen to what our body is saying and act accordingly?  I must admit, being a Taurean, am very, very stubborn and so trying to do everything I used to even though it may take me a lot longer to do them and still coming to terms that I can't always do some of the things I used to do and still want to do but realistically, practically can't.  Also believe there is a positive to every negative - although much more "limited" now, often feel stronger emotionally, wiser, keep gaining new perspectives and insights into situations that helps me feel that I'm not getting "worse" just forever "changing" and evolving.  Although none of this is certainly what I envisaged "where I would be" years ago, sure is one heck of an interesting journey!