Considered stable, But am I? Options

[Tania B]

Last week I had a review at the MS nurse led clinic and yesterday I received a copy of her letter to my GP.

The nurse considers that I have experienced some exacerbations (last month) due to a UTI and the current hot and humid weather conditions and no definite relapses of my MS, which has remined stable.

I can contact the MS nurses at any time for them to make arrangements for me to start DMT. I have an appointment in twelve months at the MS nurse's clinic and was due to see the neurologist in a year only if I take the drugs. In the meantime, I have the opportunity to attend a fatique management workshop in September.

However, my condition doesn't feel stable and I know I'm certainly not the same as last year. The fatigue I feel is not just that of a normal middle-aged woman and I can't put all my symptoms down to other causes as I did even last year. Still I look well or so I'm told and I tire myself more out trying to hide my condition to the outside world.

Although my nurse is certainly not high on empathy, she does appear to have listened to what I told her and answered some direct questions. When I told her what I understood about DMT, she confirmed what I said was correct. However, I think I really need to improve my communication skills, as she appears to think I've cut down my working hours when I'm just spreading them more evenly over my three days as I no longer have to work a long day into the evening, which is good.

As you can tell, I've rather lost the plot here. I'm sorry. I just needed to talk.

The uncertainty of having MS feels quite pernicious some days. Yesterday I was very perky.

Tania

[Christina]

Hi Tania

I can only talk from my own experiences with MS but I have symptoms most of the time, so I don't always feel very stable either but there is a big difference to that and how I feel when I'm relapsing. Try to take heart from just feeling the daily niggles of MS and glad that your condition is stable for the time being. Fatigue is a difficult one to explain to others and is often a daily part of life with MS unfortunately. It sounds like you're putting pressure on yourself to hide your MS.

Chris x

[Stumbler]

I recognise the situation that you find yourself in.

If your recent deterioration was caused by a UTI, you should return to the pre-UTI condition, once it has been resolved. Heat should also just be a temporary effect.

I suffer UTIs, which can literally knock me off my feet. Additionally, I can get a Betaferon reaction, which also knocks me off my feet.

So, do I get relapses/exacerbations? Well, I don't know, as there is too much going on. But what I do know is that year-on-year I am deteriorating. So, is that secondary progressive, with mild exacerbations? Like I say, I really don't know.

The fatigue side of the symptoms needs personal management. I was reading the "spoons" method of describing MS. This may be beneficial for you, as well.

Here it is :-

Spoons Theory

[Tania B]

Chris,

I realise that I should be grateful that I'm reasonably well. You are right. Sometimes it's just easier to hide my MS, from some people, rather than to explain what I clearly don't really understand myself. I'm not sure if I'm putting myself under pressure to hide it from family and friends, maybe from outsiders perhaps. Sometimes I just blurt it out inappropriately.

Fatique is a difficult one and it can be misunderstood as laziness or unwillingness to help or participate in activiites by some. I'm recognising lately that I tend to push myself a bit more than I should at times. I take regular rests in the evenings now and tackle fewer household tasks in one go. I'm wating to have an occupational health appointment set up through work, so that should help me at work too.

Tania x

[Christina]

Well, it does sound like you're getting to grips with managing things Tania, that's a big part of the battle . It's a tricky one this condition - it can lull you into a sense of security for a while and then back it comes, warts and all. I try to make the most I can of the better times, knowing that at some point I will relapse again and probably sooner rather than later. As for hiding it from people, I don't make a conscious effort to do that but I know others think I'm fine because they can't see my symptoms. I look fine so I must be - you can't blame them really.

Chris x

[Tania B]

So, do I get relapses/exacerbations? Well, I don't know, as there is too much going on. But what I do know is that year-on-year I am deteriorating. So, is that secondary progressive, with mild exacerbations? Like I say, I really don't know.

The fatigue side of the symptoms needs personal management. I was reading the "spoons" method of describing MS. This may be beneficial for you, as well.

John,

No I can't really work out what a relapse is and exacerbations are and the type of MS I have, either. Like you, I know I've not the same as I was this time last year when I was waiting to see my first neurologist and unaware that it may be MS. Certainly nothing seems to be clear cut does it?

Yes, I read the spoons theory a while ago. I liken my own fatigue to the amount of fuel in the tank and the amber warning light showing when the fuel is geting low.


Chris,

I agree this is a paticularly tricky condition. I have parts of some days when I feel almost like the old me and then it jumps out and gets me. It good while it lasts. People seem to notice I have a problem if I a sway unexpectedly with imbalance, have to rest or even doze off. Most put it down to my age and tell me their health problems, which is usually a welcome deflection from the subject for all. I don't blame them but feel a bit disappointed at times.

Tania x

This post has been edited by Tania B: 29 Jul 2010, 11:48

[Dianni]

Hi Tania

Hope you are feeling more perky again today. I'm sure an OT assessment at work will be helpful and as Chris has said, you are finding ways of adjusting. It's worth remembering that just because we adapt and make adjustments, it doesn't mean we have to LIKE what we are forced to do in order to continue with living to our fullest capacity.

I don't make it public that I have MS and I know I get some strange looks when I'm in my w/chair because I'm young and don't have anything visibly wrong with me to give people a clue as to why I can't walk. Having said that, I don't make a secret of it and if I'm asked I tell them straight that I have MS and that it varies from day to day in how it affects me.

On the fatigue side, I have to say that it was probably the best thing I ever did was attending a fatigue management course last year. It helped me to put so many things in perspective and helped me develop coping stratergies. In addition to this, I met people of my age who also had MS and have gone on to develop some very close friendships which have proved invaluable.

The course was run by the OT dept and funded by the local MS society. I was able to speak to the OTs about all sorts of issues and it never failed to amaze me how resourceful they are at providing to what to me seemed insurmountable difficulties. They also gave us information about all sorts of gadgets that are available at little or no cost and contact numbers for a whole range of people who might be able to help.

As you might guess, I'd recommend anyone attends this sort of course given the opportunity.

Hugs
Di
xxx

[Jackie01]

I think at the end of the day you are the boss of your body, not the medical staff and if you do not feel ready for a fatigue workshop then you are not ready. If you are not mentally fit for it then that can make you feel worse as already in your head you feel you are not ready so in effect already blocking out its potential effects? if that makes any sense at all?
So take your time to decide what to do and don't rush it just for the sake of following medical advice because you are the one who has to deal with it, not them.

If you feel up to it then try to attend as I am sure these things can be useful - after all they would not run them if they were of no use to anyone :)

[Tania B]

The fatigue management worshop could be just what I need. My MS nurse with be providing advice and information on how to manage fatigue and boost energy levels and it is followed by a 30 minute relaxation class. It's to be held, at the MS Therapy Centre I visit, in September. This is the busiest and most challenging time at work namely the start of the academic year. If I can swap one of the days I work, it should be ideal

I'll take what I'm offered. It's certainly worth a try.

Someone may have to wake me up though after the relaxation part.

Tania

This post has been edited by Tania B: 1 Aug 2010, 18:26

[Badger]

it may be worth trying provigil - I have just started on it, and I feel like my old self again - cant believe how much i have missed out on n the last five years due to feeling tired, muggy headed, short tempered and grouchy - everything has seemed like too much effort - I will pm you actually.

[Tania B]

I'm really pleased that you've found something that hits the spot and thanks for the pm. Worth thinking about certainly.

Tania