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Upbeat?

Can I ask how you all manage to keep upbeat? I have felt down this week and it’s like I have no control over it. When my head feels worse it seems to make me down and different. I am waiting on results of a lumbar puncture so I don’t know if the stress of waiting is affecting me or not. Some days I think positive but this week I have been down thinking that’s it my life’s over, I will deteriorate and be in a wheelchair in no time and have no independence etc.

Zipster First of all BIG hugs I can tell you from te experience of a brother and father who both have MS you’re life wont be over if you are dx’d. My dads had it for over twenty years and although he has a wheelchair he’s not wheelchair bound. Only using it for long trips I’m waiting to see if I’m going to be dx’d and at 36 I won’t let my life be over Hugs Mick x

Hi Zipster,

It seems like, intellectually, you DO know that even if you were diagnosed, being helpless “in no time” is not the reality, for the vast majority of people. Most can and do still lead full - but not unchanged - lives.

So when you have these “doomsday” scenarios, try answering yourself with facts: “NO, most people with MS do not need a wheelchair in six months, or even 15 years! And most will never be full-time wheelchair users!”

I don’t know how long you’ve had symptoms, but one thing I found helpful before I was diagnosed was thinking about how long I must already have had it (whatever “it” might turn out to be). Looking back, I realised I’d had symptoms for years, so logically, it couldn’t be anything that was going to kill me or put me in a wheelchair really fast, or it would already have done so!

I realise this is not going to be particularly helpful, if you’ve only had symptoms for a few months. But if you’re like the great many of us who had symptoms for years, before getting anywhere near diagnosis, you can console yourself with the thought you have already been living with it - and presumably fairly successfully, if it did not lead to the suspicion of anything serious 'til now. Diagnosis would not make you a different person, or your illness a different illness. Whatever it is, you already have it, and probably have done for some time. And you’ve been OK - you’re managing. So there’s no reason you will not be OK, and manage, just because somebody slaps a scary name on it. The name isn’t what makes you ill - you already are. But you’ve been alright with it, haven’t you?

I don’t think it’s normal to be completely “upbeat” about a thing like this. It IS hard to find any silver lining about living the rest of your life with incurable illness (I don’t personally think there is one, though some say it has helped them rediscover their values etc.) However, I think it’s possible to adopt a spirit of cautious optimism, which recognizes there will be difficulties, but doesn’t assume complete catastrophe.

Tina

x

Hi thanks for the replies. I havent been well for 13yrs and was told 10yrs ago I had m.e so everytime I wasn’t well it was put down to m.e and anxiety. I was really unwell last November and since then had a ct scan and MRI which showed lesions so I had a lumbar puncture 3 weeks ago. I know I have coped all these years but I am scared I have had relapsing remitting ms all this time and read that most people go on to have secondary progressive ms and this is why I have felt worse since November. I do try and be positive but I feel so down and exhausted all the time that sometimes its hard. Xx

Thank you Tina, reading your post has really helped me. I was diagnosed on Monday (so not had a week even to get used to it yet) Zipster, I can empathise with how you’re feeling, hope you get some news soon x

Aw Zipster, I’m not surprised you’re feeling low hun. Even the most positive amongs us will have their down days and you’ve got a lot on your plate at the moment so please don’t be too hard on yourself and try to ‘go with the flow’.

It might sound odd but when I got my MS dx (previous ME dx) it was a huge relief. Yes, ME is a neurological condition but unfortunately most people with ME are still treated as though they have a psychiatric illness.

I have had far more acceptance from family and friends since I was diagnosed with MS (sad but true) and far more offers of treatment and help. If you do have MS, you may also qualify for DMDs to slow down progression.

You’re still going to be the same person that you have always been.

Mags xx

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I just want to thank Tina too. Like you zipster I’m feeling quite down at the minute. It’s not that I’m worried about rapid progression, just that I’ve not felt like myself for much of this year so far and it’s making me sad. I’ve been ‘upbeat’ since my dx in June and have to say it’s probably not that healthy as in reality I’ve just been pretending to myself and everyone else that I’m absolutely fine, which is exhausting! I think it’s ok to feel a bit sorry for yourself once in a while xx

Yes sunflower that’s how I feel like I am not myself the last 12 months, I feel like I have lost my ooommphh if you know what I mean. Everything feels like a struggle, showering, drying my hair etc. Xx

Hi zipster

As you know, I am in a similar situation to you at the moment, so I can appreciate exactly how you are feeling.

I don’t really have any brilliant advice like the others who have posted already, but just wanted to send you big hugs and positive vibes. I try and just take each moment as it comes and do what I can when I feel up to it. If I don’t feel up to doing something then I don’t do it and do my best not to feel upset or guilty for not being able to do it. Easier said than done, I know!

I really hope you get the results of your LP through soon. I think I would be chasing them on Monday if I were in your shoes.

Please take care, and know that you are not alone in this horrible situation xx

Thanks purpledot. I have been feeling positive but this week my heads been worse and so it immediately makes me feel down and not myself. I was going to ring yesterday but I know I will only get to speak to his secretary and she wouldn’t tell me anything over the phone. He did say 3-4 weeks and it will be 4 this Thursday.

Something that has helped me through difficult times in the past and is helping me still (awaiting first neuro appointment, GP has mentioned ME, I’m convinced it’s MS) is the idea that we always have a choice about what we think and feel. Even if a situation causes an automatic response to ‘feel bad’, you can choose to stay there or you can choose to ‘reach for a better feeling thought’. We do need to acknowledge the more uncomfortable feelings and not gloss over them with positive thinking, but we all have an amount of control when it comes to our reactions. I also like to think about what I can leatn from difficult situations. Either that or realise what I’m grateful for. I have a happy and healthy daughter. I’m not able to give her any siblings and I’ve grieved for that but now I choose to focus on all the wonderful positives. So I intend to actively seek out that silver lining, but I’ll still allow myself the odd rainy day. Loving hugs all round :heart:

Hi Zipster, I’m in a similar situation. I have appt with neurologist a week on Monday. Same one I saw 4 years ago but as brain MRI was clear discharged me. I have had on going problems ever since, sometimes worse than other but more recently all the time. My GP couldn’t decide which way to go, he suspected ME or Fibromyalgia and referred me to a rheumatologist. (appt a week on Tuesday the day after Neurologist). Over last three weeks though I have had blurred vision and eye pain and the a week suffering from vertigo so he contacted hospital and asked them to bring Neuro appt forward. Don’t know what to think anymore. Thank you Tina for your comment, it made total sense and I can relate to it completely. Good luck everyone, I’m so glad I found this forum where everyone understands and can empathise without making you feel stupid or a hypochondriac! Jane x

Hi Zipster, I’m in a similar situation. I have appt with neurologist a week on Monday. Same one I saw 4 years ago but as brain MRI was clear discharged me. I have had on going problems ever since, sometimes worse than other but more recently all the time. My GP couldn’t decide which way to go, he suspected ME or Fibromyalgia and referred me to a rheumatologist. (appt a week on Tuesday the day after Neurologist). Over last three weeks though I have had blurred vision and eye pain and the a week suffering from vertigo so he contacted hospital and asked them to bring Neuro appt forward. Don’t know what to think anymore. Thank you Tina for your comment, it made total sense and I can relate to it completely. Good luck everyone, I’m so glad I found this forum where everyone understands and can empathise without making you feel stupid or a hypochondriac! Jane x

Zipster

I don’t think I’m particularly upbeat (and the “brave” tag really freaks me out!) because inside I am desperately scared a lot of the time. So yes, I understand your wheelchair fears as mine are pretty similar…

Instead I’d say that I’m trying to get by :slight_smile: You know, go to work, talk to people, make small plans (I can’t handle big ones right now), smile and laugh occasionally, that sort of thing. I mean, what else can you do?

I’m likely PPMS so it’s a lot to swallow and truthfully, I think it’s pretty cruel - earlier this year (March wasn’t that long ago) I was teaching girls to hang upside down on poles to get fit at a local gym. Now I’m walking with a stick and practising balance exercises that require holding on to something!

OK, so that sounds pretty miserable but at the weekend I went out with family, my step-daughter is home for a few more days before she goes back to Uni and I will do something I enjoy at the weekend. So life isn’t that good at the moment BUT it’s certainly not THAT bad either!

MS will test me/exhaust me/frustrate me/upset me BUT it won’t kill me just yet. I think we all have down days, my advice is to appreciate what you HAVE got. As for the rest, it really is a case of looking after yourself the best you can and enjoying the life you do have.

Sorry to ramnle but actually thank you as when it’s tough (like today) you do need to remind yourself that it’s OK and you are not alone in this

Sonia xx