Are these "normal" symptoms for MS sufferer

[DazPa69]

Hi everyone...

Firstly, thanks to all who read/posted on my first topic, very much appreciated.

Anyway, just before xmas i had my 1st real diagnosed relapse. Twas not a pleasant experience, but, i was given a massive course of steroids for five days and told i would be fine. Somewhere around mid Jan i seemed to be doing better, however i have slowly deteriorated again, in my opinion, (and my wife's, who has been telling me for last week or more i was heading for another relapse :( Mega scary.... ).

Do any of you have pain and discomfort walking on a daily basis? My legs almost gave out onme while in tesco with my daughter earlier, it was a shock for me and i am now unsure of what to do now?

When do you decide to use a wheelchair? I mean i can walk, (slowly stumble i think is a more accurate description), but, only a very short distance totally wipes me out? I end up puffing and huffing like iv run a race. I have been getting my words all jumbled up again and my speech is affected again, (my mum told meon fone earlier).

I have just finished a course of antibiotics so it not an infection. I have pushed myself a little bit but i am used to being a hundred mile an hour person.... (well, i used to be....). I actually rang my ms nurse and asked her advice. Should i use a wheelchair, walking sticks, etc and explained i dont know if or when i need them? When should i decide to use them, etc. She said they will assess me when i go in for my next hosp appt at end of feb. But, after what happened today? It's laughably, as i was stumbling through the shop trying to keep up with my 8 yr old daughter i was thinking, "i can see why sticks would be of use to me now". Doh! Too late... two minutes later i said to the lady in tesco, "i need to sit down", and just plonked myself down next to her counter. If i hadnt sat on that counter id have hit the floor.That was a first for me... I asked my daughter if i had embarassed her and she said no, so that was ok, but i almost cried, sat there with all these people fussing me. I felt.... I dont know how i felt but i wanted to cry... Im finding it a bit wierd lately, i thought i would be fine, but i seem to be back where i was just before my relapse?.

So, sorry for rambling on, but, is this life now? I mean i try to do something, anything, and after only a small ammount of effort im totally wiped out. My legs are uncomfortable and unsteady to walk on, i get all jumbled up in my head if put under any sort of pressure, (you should hear meon the phone with anyone official... Phew... its odd). I often feel slightly giddy and unsteady? Sometimes, even just turning my head to look at someone talking is odd because i turn to look at them and it feels like my brain slowly catches up in slow-mo, its odd.... I just feel like im falling apart? My ms nurse said because im coming out of a relapse and that i had a quote "major infection", (suspected urinry infection), that i should just give myself time to recover and all would be well. I must say i have major doubts.

Please tell me what "normal" life feels like with ms cos im dumbfounded.....

[Scully]

Hello Daz,

 

Oh dear, you really have been through it recently huh?

 

I'm not sure there is a 'normal' for us MS'ers. We all have the same disease, but we are all so very different, in so many ways.

 

For me, pain and slow walking is 'normal' for me, it's just the way it is, but I am a Primary Progressive MS'er, so I know it isn't going to improve, for me anyway.

 

Reading your post, although you've recovered from your UTI infection, and completed antibiotics, the residual effect may linger a while. Any infection, can and does send the MS into overdrive and it can take a while for your body to recover from it, even through you've finished the antibiotics. That, coupled with exertion, even though it wasn't exerion to you, isn't helping.

 

You do need to rest, hard as it may be, it's the only way to go for now. Listen to your body when it tells you to rest up.

 

As far as walking sticks, wheelchairs and any other walking aid. The decision, however hard the thought of it may be, is yours alone.

 

I started with walking sticks some time ago, embarrassed at first, but found the cane gave me so much more confidence, helped my balance and generally did what it was supposed to, helped my walking. I have a rollator, ( a wheeled walking trolley thing ) for times when it's really bad, and a wheelchair if I'm going somewhere that is likely to involve some extended walking.

 

Look upon these 'additions' as an aid to make your life easier, rather than struggling.

 

I'm sure your MS Nurse is correct when she says, following the infection, your MS will settle again, it just needs time and rest, there are no magic answers or immediate short cuts.

 

Mixing up words, balance issues, and the swimming head, seem to come and go for me, but get worse if I'm tired.

 

Never apologize for ranting or rambling on. It's what this forum and us who inhabit it, are for.

 

Scully

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[Hezza]

Normal for an MSer is, as Scully says, pretty impossible to define.

 

Try not to panic too much. While you've finished the antibiotics for your infection any effects that it had on your MS may take a little longer to settle, especially coupled with the fact that you've been recovering from a recent relapse. Your body may be trying to tell you to slow down as it isn't fully recovered yet. I know that I sometimes feel like it's one step forwards and two steps back when recovering from a relpase because I feel better and promptly do too much and feel worse again. It's a hard balance to find.

 

As for needing sticks or a wheelchair, if you feel that you need something now then I would speak to your MS Nurse again to see if you can be assessed sooner. It's a big decision to take, and I'm not speaking from direct experience, but they are there to help you when you need them and to help you to be more independent and confident when you are out. Needing to use one now does not mean you will need to use it full time.

 

I can understand the potential embarrassment factor. When I was recovering from a severe bout of Optic Neuritis I was assessed by social services and they gave me what is called an Indicator Cane. Essentially it's a folding version of the white stick that visually impaired people use that you carry, visibly, when out and it warns others that you have a visual impairment. At first I felt very awkward using it but it was very useful, especially when travelling on my own, as airport and train station staff and even taxi drivers noted it and offered me extra assistance. Once I had recovered sufficiently from the relapse and my confidence improved I put the cane away and haven't used it since. It was a while ago but I know it was several months before I was able to do that.

 

Hopefully with rest and time things will start to improve for you again.

 

Edited 2 Feb 2012, 8:56 am by Hezza
typos

[Christina]

Hi Daz

When do you decide to use a wheelchair is a good question. I have one for occasional use, part funded by my Social Services voucher scheme for when I am relapsing and find it exhausting and difficult to walk any distance. I use it as and when I need to and find it allows me to do things I wouldn't otherwise manage. I can't say I like it much, but when needs must I use it.

 

Having said that, I've just bought a mobility scooter and I like it a whole lot better than the wheelchair. I can zip about the shops and pavements, talk to my husband walking along side of me and even carry bits of shopping (which he hates doing) in the small basket. It's really great and I'm so glad I've got one. You can hire them from Shopmobility on a daily or weekly basis to see how you get on before committing to buy. I did that for a week and didn't want to give it back I can now reach shops I haven't been in for months, since my latest relapse left my walking distance much reduced.

So, it would definitely be worth thinking about getting in touch with your local Social Services and asking for an assessment or thinking about a scooter as an alternative.

Chris x

[PaulX]

Hi,

The symptoms are not uncommon, but as you will come to discover, there is not a "normal" set. It is a bit like pick 'n' mix at Woolies, we all end up with a sightly different bag full.

Difficulties with walking is the thing that affects me most. Like Scully, I am progressive, so it just gradually gets worse over a period of time.

But having said that, it can still vary from day to day, depending on all sorts of factors, the weather, am I tired, am I ill.

 

You may be in the process of a relapse. if so then there may be a period of recovery afterwards. It is really hard to say. The only one who is really going to know what is going on with you, is you. Over time you may get to understand a bit how you react or you may not. That is the joy of MS, it is full of surprises.

 

To use a horrible phrase, you do have to "look at the big picture". Don't judge on one day or one week. It is a slow acting condition, so you need to look back constantly to see how you are doing.

Keep a diary, it makes it easier then, you are not relying on memory then. i make note of when things change for the better or the worse and it has helped me gauge my progression.

I do hope for you it is only a bad spell and that you get a period or recovery soon.

Paul

[DazPa69]

big thanks to you all for your replies.

I have bought myself a collapsible cane from tesco, (only

[Scully]

Hello Darren,

 

Glad to hear that you a feeling a bit better now. With regard to the 'old me', yes, life does change with MS, and it is a case of re-inventing oneself, and simply do things differently and taking lots of rest. Sort of, chores, rest, chores, rest etc.

 

I recently did a blog called If My MS Could Talk, concerning the need for MS and rest. And it seemed to help a lot of people so, give it a read, and see if it helps you understand a bit more.

 

http://ms-people.com/forum/blog/10/entry-240-if-my-ms-could-talk/

 

Glad you are fairing a bit better now

 

Scully

x

[derby42]

Hi darren. I just read through your topic and found it really helpful. Im just starting to learn too and i get the symptoms youve described but the advice that paul gave i particularly noted to be true. I often feel like ive had a bad day . . But when i look back on the last few months, where i was then and where i am now, i am so much better. Its taten me nearly a year to get to the point of just changing a few nappies and sorting a few bottles out and doing a bit of washing. MANY MONTHS. Sometimes looking for improvements on a daily basis or even weekly just wont work until one day you realise that you are doing things you never thought youd do again. Im not a patient person and im hoping with all my heart that i continue to improve so i can take my children out but im thankful that im not the dizzy stumbling wreck i was. Thats not to say that these things dont affect me still especially when im tired but now i know why and that it will pass with a good sleep (which im desperate for right now cos baby kept us awake most of last night lol) this crap takes forever to get your head around and im pleased you ramble on cos i do too!

[cazza]

Hi Darren, I know the words, don't panic are easy to say,difficult to adhere to. I started with walking sticks (embarassed at first) and still wanting to sit down before i fell down. The best thing i ever did was buy myself a rolator,after getting over using it outdoors,i now feel so much more comfortable and confident with it,i have something to hold onto and keep my balance,something to carry things on, and most of all, something to sit down on, anywhere at any time.

I try to keep totttering about as much as i can and stop and sit as often as i need. Quite honestly it's a pain in the bum,but only you can and will know what's best for you.

 

Good luck finding it. Keep trying.

 

Cazza xx

[mustard]

Hi Darren,

Getting used to this MS lark is a constant process I have found. When I was first diagnosed, I expected I'd be completely fine between relapses. Getting used to the day to day struggles and how they themselves fluctuate has been one of the hardest things to get used to I've found.

I can very much relate to what you describe during your supermarket experience with your walking. For me, this happens when I've walked too much or overdone things in any other way and then try to walk. This often worsens during a relapse, but in between relapses, one day I might be able to walk double the distance to another, some days I need my stick and some days I don't. It really is all quite confusing!

I have sometimes found that after a course of steroids I have a good spell and then a bit of a plateau or setback, for me this has sometimes happened at about the point you're at now after steroids, and of course if you've also had an infection this will be having an impact too.

The good and bad days in between relapses was something that I personally, was definitely not prepared for. But I have gradually got used to it and learnt to accept the MS and its odd ways!

 

As for the wheelchair question, that is the millondollar question isn't it?! I am also in a very similar thought process as you about it at the moment. I CAN walk, so why do I need a wheelchair I think to myself. But like Chris said, it would enable me to do things I can't otherwise do. A friend has asked me to go to Paris with her next month, I really want to go, but I am concerned I won't be able to manage the walking from Kings Cross to St. Pancras (everyone says "oh that's not far, it's only over the road" but it MS distance, it is pretty damn far!) and I don't know what amount of walking is involved at the other end. I could hire a wheelchair for the weekend, but you have to let Eurostar know in advance, and be using the wheelchair for the whole trip (and bring your own wheelchair so it'd mean having it with us in Paris too). I am in such a quandary about it all because as much as I want to go to Paris, I don't want to use a wheelchair. But it seems crazy to turn down the trip.

Anyhow, I'm rambling now, just wanted to let you know I also understand where you are coming from on it.

 

Oh and with the stick, make sure you have it at the right height for you etc, having a stick in the wrong position can cause more problems. I also have a collapsible one and find it brilliant as I can pop it in my bag and whip it out when necessary. An OT that visited my house adjusted mine for me, I think I had it too high, I can't remember for sure but I think she said it should be at hip height.

 

Glad you are feeling better now anyway and are getting used to the new you. MS is often described like a grieving process at the 'loss' of the life we once had, but it doesn't have to mean that the new life is worse.

 

Take care

Mustard x

[Christina]

Mustard,

Just a thought, but do you know you can take mobility scooters on Eurostar for no extra charge in their luggage hold. You could hire one for a week from Shopmobility, who will allow you to take them abroad. It cost me about £32 for a week's hire. You might feel easier with a scooter which your friend wouldn't need to push.

 

To be honest, I have no idea if the scooter needs to belong to you to fit Eurostar rules, but I'm sure you could find out.

 

 

 

Chris x

Edited 7 Feb 2012, 4:20 pm by Christina

[mustard]

No I didn't know that Chris?! That's good to know. It didn't mention that on their website that I noticed. Although I am not sure I'd feel any better about a scooter, I do associate them with old people (which I know is wrong) and can't stop thinking about a comedian I once saw (can't remember who it was) who did a bit about them, calling them obese-ycles. As I am rather concious of my weight, being technically obese at the moment, I can't get the thought out my head that people would think along the lines he said (don't get me wrong, I did find him funny at the time) that I was only using it because I'm so very fat. I know it is irrational and we shouldn't give a hoot what others think. I am much better at not caring than I used to be since having MS - but when it comes to issues of weight it is a bit of a sticking point.....

 

sorry to hijack your thread there Daz!

 

Mustard x

[Christina]

Hi Mustard

Here's the link

 

http://www.eurostar.com/UK/uk/leisure/travel_information/on_board/seating_plan.jsp

 

Yeah I can understand how you feel, but actually there are lots of younger people who use scooters but I know the public perception is often focused on elderly use. I guess it comes down to the choice whether to be able to do things or not. I'm pretty sure it would be hard to use a wheelchair or scooter on the Paris Metro unfortunately.

Chris x

[mustard]

Yeah I am thinking that too about the metro, although I am pretty sure there wouldn't be any metro use as we'd probably taxi it to my friends place and then just stay in there and drink and eat locally! Also the place I'd be staying is on the top floor of a block apparently and only has a very small lift, so just thinking re a non foldable scooter - could be problematic. I will have to check how 'ghetto' her place is! The friend I'd be going with is the one friend I feel safe going out with, if the boyfriend isn't there, she has an awareness of the MS without it being an issue. The friend we'd stay with also has recently had walking problems due to an operation so my friend has asked her about how much walking would be involved as this is something she's had an awareness of recently, but I've yet to hear back and now my friend has gone to Oz for 3weeks so thinking I will just have to wait and make an instant decision!

 

Will check out the link and stop hijacking your thread now Daz!!

 

Mustard x

[DazPa69]

Well, thank you Mustard and Christina for a very entertaining addition to my thread...

Firstly, Mustard your understanding words struck home as i was already thinking along those lines. I have been using my collapsible cane much more lately, when i got up this morning i could walk fine. Then, when i went out with my daughter after skwl i used my cane cos my leg wasnt as good. Iv even bought another collapsible cane, always handy to have in case i need it? As for the ups and downs in general, i am starting to get used to it. I have even begun to set more realistic targets for myself. (i cringed earlier when the girl in our local Aldi packed my shopping into my bag for me cos i was using my cane.... You've been doin too much again she said... ). I just smiled and thanked her. Not so very long ago it would have been, "i'm fine, i can do it myself....". But, the girl in question knows me, i'm in the shop very frequently and she was just trying to be helpful and supportive. Anyway... i'm rambling again....

So, back to the point. Mustard, i agree with Christina. i think a mobility scooter is the perfect solution for your trip to Paris. i'm going to borrow my father in laws to take my daughter to our nearest bus stop when i havent got use of the car. boxxox to other peoples opinions! When i go in for my appt @ neuro dept this month my ms nurse said they will assess/measure me for a chair, i intend to have one in my boot or to hand for whenever i need it, (see comment on others opinions). Thank you also for letting me know someone is just where i am, and all this oddness is to be expected and just life's new twists and turns.... At least life wont be predicatble or boring, eh....

So, thank you Christina and Mustard for an enjoyable interlude. Mustard, hoping you go and have a fantastic trip to france, be walking, stick, chair or scooter.... Just enjoy.....

[mustard]

Ah I can relate to that too Daz, the offer of help that would once have been flatly refused for fierce independence now having to be accepted. It sounds like you are dealing with this all very well and quickly adapting to your new life. Like you say, certainly not predictable or boring by any stretch!!

I think this thread has given me the impetus to just go with Paris, in whatever way I can, like you say be that walking, stick, chair or scooter. Bugger it!

 

 

Mustard x

[Scully]

Hello Daz,

 

Pleased to hear that your folding cane has proved useful to you. I too have several now. They never seem to be where I am at times! Or they are all downstairs and I'm upstairs, or vice versa.

 

The wheelchair I was measured for by the OT arrived, and was promptly stored away in the back of a cupboard, and there it stayed for weeks. I was determined that it was never going to be used, that I wouldn't need it, that it meant giving in.......that soon changed however, when I discovered that in fact, I could now join in with family days out, I could be wheeled along the prom, while my grandchildren rode their bikes alongside me. In short. I got a bit of life back again, rather than giving in to anything.

 

Getting help at the store, or anywhere else, made me stop and think too, for a while. But again, I soon discovered 'how to accept help' not easy when the uppermost part of my character was independence in all things !

 

You do come across as a person who is coping well with the changes, which is brilliant. After all, those changes just serve to make our life easier and probably more enjoyable, not just for us, but for those around us too.

 

Scully

x