Hi I got diagnosed a week ago, I also have fibromyalgia and my consultant believes that the fibromyalgia is reacting with the ms, however he wants me to have a lumbar puncture because he thinks that something else might be going on. I’m really struggling with the diagnosis, I have an amazing husband and older kids but I feel like a burden and sometimes I feel like they resent me, I basically feel completely empty and useless, the pain is preventing me more than anything else from functioning. I m sorry for off loading
Hi Frankie. You have my sympathies and total understanding. I think it’s probably quite usual for people diagnosed with MS to feel they are destined to be useless, a burden on other’s lives and ( apologies if I’m putting words in your mouth) not loveable. It coming up to 17 years since I was first diagnosed and I remember feeling a lot of what you are possibly feeling. I also remember saying to my then girlfriend something like ‘I’m not a good bet, a good option and quite understand if she wanted to break up’. Some years later we got engaged and then married and I’ve just shown her your post. She felt really sad at what you are feeling and said it’s probably a quite normal response to a frightening and really unsettling diagnosis ( she also suggested that I mention that for the last couple of months or so I’ve been taking care of her after she fell and broke her shoulder ).
Off load as much as you want Frankie but please don’t write off yourself or your future. Seventeen years after diagnosis I’m not doing too bad , still enjoy life, use a mobility scooter for any walking over 15 minutes or so and find hot weather difficult. A few other symptoms as well but nothing terrible.
Are you on a disease modifying treatment yet?
Hi, thank you so much for replying, it’s really appreciated, infact it brought a tear to my eye and you made me smile at the same time, knowing that maybe I’m not so alone as I feel. I’m not on any of the meds yet, I’ve got to wait until I’ve had my lumbar puncture first. I’m on a ton of painkillers that take the edge off, I just need to sleep, so the consultant has got me weening off one tablet to go on another which should apparently help me sleep. The ms nursing team should be phoning me next week and I’ve been told that I need to mention that I could do with an occupational therapist to help me get functioning. My husband is my soulmate, we’ve been together 21yrs and married 17. He just says that we need to take 1 day at a time and see what happens after the lumbar puncture. I’m only having that apparently because he’s not sure which ms I have and he thinks I might have something else wrong as well as the ms but wouldn’t say what. Thank you so much for making me feel like I’m not alone
Hi Frankie. I’m going to say that you are most definitely not alone! This is going to be a slightly long and seemingly rambling reply, probably a bit somber as well and in some ways it’s just me sharing my own thoughts and reflections on MS and stuff.
I had lunch yesterday with my old boss. We are both retired and in our late 60s and we were just chatting about friends, old colleagues etc and how they were. He remarked that day to day , we see people and think they are OK and doing fine whereas in reality it’s amazing how many of them have their own hidden health and other troubles. In my case it’s MS ( not so hidden) in his case his wife suffers from COPD, a colleague of ours was diagnosed quite out of the blue with untreatable lung cancer, another has acute myeloid leukaemia and another old colleague’s daughter has just broken of her engagement - nothing in that you might think but for the second time in a few years her fiancé has been ‘sectioned ‘ and she knew she just wouldn’t be able to deal with any future episodes. She is now struggling herself - torn between missing her fiancé, guilt for leaving him but scared of a future with him. We talked of other similar health and other troubles experienced by people we knew and ended up concluding that in reality, very few of us get through life without health and other scares and traumas. We start off with hopes and dreams but life can throw a few large spanner’s in the works! I was also thinking of Michael J Fox - the actor in the ‘Back to the Future’ films. He was diagnosed with early onset Parkinsons and after going into depression and drink for a while then adjusted and accepted his condition and when once asked by a journalist ‘do you ever wonder ‘why me’ replied ‘ I used to but I now think oh well ‘why not me’.
Anyway , I could ramble on but for now, I guess that whether it’s MS, fibromyalgia and MS or any of a dozen other conditions you are definitely not alone !
Having MS and fibromyalgia is really , really unfortunate and I feel for you. I think your husband and soulmate is right about one day at a time.
If it’s of any help then when my mind gets over anxious or my thoughts get carried away with themselves then I try a bit of mindfulness and in the past I have taken myself off for some counselling ( I suppose to stop thoughts and fears forever going round and round in my mind, and to find an outlet other than my wife for expressing and resolving thoughts and fears etc).
The other thing that I have found useful in terms of MS is the book and website of ‘Overcoming MS’. Put together by an Australian medical professor who has MS himself it makes suggestions for diet, exercise, sunlight or Vitamin D tablets and meditation/ mindfulness plus ( and definitely not an alternative to ) disease modifying treatments. I find it helpful partly in terms of leaving me feeling that rather than just leave it the medical profession and treatments I can perhaps do something to help myself and partly because if it does nothing else it’s going to give me a healthy diet and lifestyle. I do think it’s worth a look.
All the best
It’s a bugger of a disease, especially in that noone knows how an individual’s MS may develop. I have MS, diagnosed out of the blue six or so years ago, bit I see it as ‘good’ MS. Obviously I’d rather not have it, but I’m relatively ‘settled into it’ now and don’t feel it has that much of an impact on my life. Yes, I can’t walk as well as I used to and i get tired more often but hey, I still have a pretty good life! I love my work (as a counsellor in private practice) and perhaps most importantly for me, at least, have learned to really value the practice of mindfulness mediation. It helps keep things in perspective, teaches us to practice self compassion, focus on the present, and helps keep calm and balanced (at least some of the time)! I highly recommend it!