Can You Help Me Set (new) Goals?

[corina]

my dear friends,

at first i want you to know that although i can't be reading (let alone writing) as much as i want to these days, you all are in my thoughts always. there are several posts that i would love to reply at but i just don't have the energy to. so i feel a bit guilty to ask for your help where i can't give much myself right now. but as rehab is so very important to me, i'll give it a go.

as some of you might know i was admitted for 6 weeks in june and now i'm almost 5 months later and still going!!! what i find so very difficult though, is setting goals. my pt asked me what my goals are and it took me quite some time to find: walking for 5 minutes, swimming, wheeling my chair by myself while in a museum or shop and exercises to strengthen my muscles.

i am working very hard and walking is going better. although very slowly there is progress. i started off with 40 seconds 5 times with 30 minutes laying flat in between. now (after they adviced me to wear another compression thing around the waist) i am on 1.05 minutes 4 times and 40 seconds with 10 minutes rest in between. I feel very proud about this!!! wheeling my wheelchair is a problem for me. although it seems that my muscles are strong enough, it takes me too much energy (to start) which results in feeling faint, yawning etc. although i have the ability to rest in between (they have restrooms where i can be in bed) i am not sure if i should go on trying this though. when i asked my pt (who really is very lovely) whether i should continue, she told me that maybe i shouldn't (it is up to me of course) and that i could set myself another goal. and this is what i find so difficult. i do not know what my goals could be. also, because my goals must be within reach.

swimming is another issue. i can float at my back (with floating stuff under arms, legs and around my neck) and "swim" with my arms. as soon as i start moving my legs i start to feel faint, chest pressure/pain and i even fainted (which learned me NEVER EVER to be in the water all by myself!!!). now this week i tried to "swim" in a normal position, but i had a lot of trouble keeping my head up AND (here comes the funny part) my legs and back came upwarts all the time, which made it even more difficult to keep my head up. i did have lots and lots of fun as it was such a silly situation and when my pt pushed my back a little downwards it felt much better, but i just couldn't do it myself. i felt miserable while tilted out of the water (they have a special thing so that i can be taken out while laying flat and then there are the lovley girls that help me get dry and back in my clothes again), but being in the water for me is the best moment of my week!!!

so, does anyone of you have any idea what goals i could set? they have to be within reach (and there is the point i think, as i do not know what is within my reach) i have been told. i always loved sports, like playing tennis, rollerskating, playing football, running etc. also, being outdoors is a big bonus for me.

thank you all for thinking with me, and do know that you are in my thoughts,

love,

corina

[mkoven]

Glad to hear about the progress! I'm halfway through rehab and fell it really helps. I think exercise resets/normalizes my autnomic responses, if I don't overdo it.

I have to start exercise slowly on a given day, as my body's initial response is to drop my bp. Once I'm warmed up, it usually normalizes. If I squeexe my stomach or rearend, sometimes it helps. I also have to time exercise with meds. I'm best an hour after midodrine. I can't do anything that's too leg-focused. It's odd that I can wlk now, but I can't bike without feeling really sick.

but now I can walk a reasonable distance, which I love. I love being outside in the fall with the leaves turning. I'm on sabbatical in Washington, D.C. and really enjoying it.

[MomtoGiuliana]

Hi Corina

It is so great to read an update on how you are doing with rehab. It sounds like you are in an excellent facility and I am so glad they are taking such good care of you.

It sounds like you have made progress, which is a good sign. Just that it has been slow. Doing anything standing can be so difficult with severe POTS. Perhaps you could set a goal for an activity that involves sitting or lying down along with a walking goal that is less than your initial goal of 5 minutes? (I know when my POTS was severe that walking more than a matter of seconds was extremely hard).

Do they do anything special to ensure you are hydrated adequately?

I am thinking of you!

Katherine

[MightyMouse]

For me, I always set the goals that would give me the most access to the things I love, and/or missed the most. When I was out of work recuperating from my back surgeries, I missed the most basic things--things other people might think are silly things to miss, like being able to have enough stamina to work with kids again, even if just for a few minutes at a time. I knew I would not be able to lift them again, but at least to be able to chase them around for a minute or two, or play a short game on the floor without becoming too exhausted.

All I can suggest is that you think about what would make you most happy, or give you more access to people, places or things that make you happy.

Nina

[carinara]

Hi Corina, i?m glad that you still have the chance of being in rehab and that you are willing to take the

opportunatey to get all the benefits out of being there.(Thats a big goal within itself :-))

I am not familiar with how "rehab" works in the Netherlands. Are you staying at home and travel to the

rehab hospital or do you have to stay in the clinic all the time? When i was in rehab the first time

in 2004 i had to go away from home for 4 weeks, there was no possibility to go home in between because

the clinic was 300km away. Last year when i had to go to rehab again i had to spend 8 weeks away from home

but this time i made sure, that the rehab clinic was closer to my home and therefore i was allowed to

spend the weekend at home and with my daughter wich i missed very very much.

When i was in rehab, i didnt set myself big goals, because that way i didnt put extra pressure and

stress on me!One of my problems has always been that i pressure myself to reach certain goals and

that is sometimes not very healthy, i often made myself sicker trying to reach them.

I chose little goals that i was happy about, like: putting my compression stockings on

without any help, making it 10 minutes trough eating lunch with the other patients (just eating a few spoons

full of soup before i had to lay down again), making it somehow trough the appointments you have, whilest

being in rehab. I felt really proud of all the little things i achieved. I took (and take) every day

as it comes and have a big trust that all happens for a reason.

Whilest in "rehab" one day i could do much more than on other days so setting goals in things were

my health was involved (like walking for set up distance and so on) didnt make much sense to me anyway.

Because You know yourself how POTS can effect people. What our bodies allow us to do can change from

day to day or hour to hour.

What i found very very important whilest being on rehab was the fact, that

i could push myself to my limits and beyond at times, knowing that the nurses were always around to

watch me. That way much of my insecurity about how to react in them sort of situations,

disapeared.

I took the rehab as an opportunatey to get to know my limits better and to find out much more medical knowledge about

my situation (what i can and can?t do)l

A wonderfull experience in rehab was to see, that whilest i felt really awful at times, the nurses and doctors were around, telling me that

nothing bad is going to happen, that iam not going to die and that gave me a lot of confidence back.

Tere are also other points and benefits this "rehab" can give you:

- it gives you to opportunatey to leave the house and see other things

- you can tell you family about your experiences in during the day

- you are doing what you can to get better

- you meet new people, maybe new friends????

- Iam sure you experience a lot of nice situation with friendly people there

You are doing all you can and thats the main thing,

I wish you all the best and i am sure you will find your own personal answer to your questions.

A big hug from

carinara

[Miriam Poorman-Knox]

I think that since water is so fuldilling. Ask for the ankle "wraps to help keep your legs up. And perhaps a board to put under you and help keep your head up. When the therapists push or help you this is the absolute best. Your body will learn to respond. Walking in the water back and forth (holding for balance) turn and go side to sise and this will strengthen your leg ,butt, and abd. muscles. Sit before you get out or immediately after. Great job. Miriam

[corina]

thank you all so much for your insights.

unfortunately miriam, being vertical in the water is a big no no for me (i faint almost immediately) but i do understand how it would strengthen my legs!

i am travelling to and from the rehab center 2 or 3 times a week which means that for the rest of those days i have to be in bed, i am not sure whether they would take me as an inhome patient it's just that i decided against that as for me it is most important to have my family around me. i never have chosen the easiest way for myself, that's for sure

nina, you are right, i should focus on things that make me happy, i will definitely think that over as there are so many things that make me happy

i stay hydrated by drinking a sportsdrink that works best for me so i take the bottles with me as well as lots of little bites. thanks carinara and mkoven for sharing your own rehab experiences. that really helped me as well.

i do hope to be allowed to stay some time longer as i enjoy it so very much. next to pt and hydrotherapy i also work with a social worker to find some kind of acceptance and balance in my "new" life and will be seeing a neuro psychologist as i will have another neuro psychological test. my bad memory is a huge problem for me that i will probably tackle by using a pda (though it will be a very hard job to get that under control ). it is great to be working at myself especially as all the people that work with me are understanding and very very sweet!!!

love,

corina

[morgan617]

Hi Corina,

I'm glad it is going as well as it is, although it's never fast enough for any of us! I have a power chair and a transport chair, which are not made to propel yourself. The only suggestion I can make is, propelling yourself manually is very difficult and takes up a lot of your energy.

Maybe you should use that energy to concentrate on other things you really want to do, as opposed to using all your strength to propel yourself. Then you can concentrate on the things you want to progress at more. I don't even attempt to push myself, I wouldn't be able to do anything else.

And we all know that just because we aren't on here everyday, we never stop thinking or caring about each other sweetie! Take care and good luck! morgan

[willows]

Hello my wonderful friend over the water

Here's the first incentive for you ............................

You have to be standing by your front door to greet Mark, Mike and myself when we take the long 36 hours trek across the water to see you and your family and bring your Christmas gifts

I am still working hard on the travel plans and we are all hoping that we can get to you around first week in December .

We will stay for two nights in a local hotel so you dont have to worry about where we are staying etc.

We will also be taking you all out for dinner ............so second incentive is to be able to sit and eat with us somewhere

nice .!!!!!!!!

Also , if you contact your mum and dad and they want us to bring anything to you for Christmas , well we only live around 30 mins from them so we can quite easily go down to them and pick up anything ..............and then if you want anything taken to them ...........well we can go back down again when we get back to the UK and be Santa for you

I've nearly finished your picture and hope to bring that with me ..............but as I said 'You have to meet me at the front door ...........standing up ' that way I can give you a huge hug !!!!!!!!

See you soon .............love to the boys and your nice hubby and tell them we will be seeing them again soon Ami xxxxxxxxxxxx

[corina]

thanks for your wise words morgan, you might be right about the wheelchair. i am learning not to push myself so much, it has to do with acceptance you know . . .

ami, you do crack me up!!!! what an incentive you come up with!!!! and i didn?t even think of them myself!!!! i am very excited to have you guys at our home which makes the adrenalin run (and that is very good for me!!!) i cannot wait to have you here. in my mind i'm making so many plans that i'm sure can't be done, but give me so much fun, even just thinking about them!!!

again, thank you all for helping me, you gave me a lot to think about!

take care,

corina