W/C

[GRETCHEN OBST]

Hi all,

I was wondering if anyone has to use a wheel chair to get around sometimes? recently it has been the only way for me to do some things like shopping. esp if I want to mke it to work at all. Which did'nt hapen today because I did 2-3 household chores yest. I guess no laundry or making meals for me.

 

I hope everyone else ishanging in there. I think of you often even if Idon't know you.

gret   

Love & Hugs

Gret

[Christina]

Hi Gret,

Sorry to hear that you are really struggling with your pain levels at
the moment. Mine have flared up suddenly over the last couple of weeks
too - its usually something that comes on gradually, but this time it
hit me like a sledge hammer!
I have never had to use a wheelchair to get about, but I know that
some of the others I have chatted with have used them from time to
time!
I am fortunate that I still live with my parents and so I only have a
limited amount of chores that I have to do myself.. If I was totally
self-sufficient then it might well be a different story as I would
probably be worn out and no doubt that would aggravate my pains a lot!
Then I might have to resort to a wheelchair.
Also I am a bit stubborn when it comes to letting my CED beat me! lol
I love walking and on my good days I am out and about walking my dog -
as often as I can manage! I like to have my independance and be able
to go where I want without having to rely on anyone to come with me,
so I suppose I have always pushed myself to keep walking no matter
what!
I can totally understand that it would be easier going to use a
wheelchair - I know Lauren used one to go xmas shopping with her
family and she said it was far more enjoyable as she didnt get so
tired!
I guess we all have to work these things out for ourselves and see
what works best! All I can suggest is that you dont become too reliant
on the wheelchair as you need to exercise your legs too.. Muscle
wasting actually causes pain to worsen, so make sure you keep them
working!! :o)

Love, Chris. xx

[Mary]

Hi Gret,
Yes, I have had to use a wheelchair and a walker to get around when
the pain levels were really bad. I am alot like Chris in the sense
that I am stubborn and try not to let the CED beat me! Sometimes when
the pain is really bad, I have no choice, I tire easily and I can not
keep up with the "normal" pace of life. If you feel better using a
wheelchair then by all means do it. I agree with Chris that you need
to keep your legs moving but don't push yourself when the pain is
really bad. We all have good days and and bad. When you are having the
bad days, take it easy, keep your legs warm and don't overdue it. When
you are having your good days, try and get a little exercise in, not a
lot, just enough to keep your muscles active. Something else to think
about; when you exercise the hormone that releases in your brain has
pain relieving qualities and can actually help with pain. If you have
a heated pool avaiolable to you, that is the best exercise for people
like us. If not, you can actually get in the bathtub and do leg
exercises, moving your legs up and down, flexing your feet back and
forth. The main thing is to not do these things on the days that the
pain is really bad. Do you take pain medicine? I know some don't like
it and some do. I happen to be on 2 kinds of Morophine and an anti
inflammatory! It sounds like it's a lot but I have managed to try and
keep up with my 11 1/2 daughter and 10 year old son! i was told I was
never going to be able to have children and that I would probably be
in a wheelchair one day. Well I have 2 healthy children and so far no
wheel chair! I did break my leg a couple of years ago and I had to use
those electric wheelchairs that they have at the grocery store. Those
are the greatest things! They are very helpful when you need them!
The main thing you want to do is, try different things and figure out
what works for you. We all have different pain thresholds and it is
very tiring to be in pain. It takes a lot of energy to be in pain all
the time so... don't get down just tell yourself that there is a light
at the end of the tunnel. You know the flare up will eventually calm
down and you will be able to resume your life. That helps me a lot
like in a time like now. I have been in bed for almost 3 weeks because
of the recent weather in California. It has been raining off and on
for 3 weeks now and every time it gets ready to rain the pain gets so
bad. I get stabbing pains in my legs and no amount of medicine will
help until it rains. that makes it very tough on me and it is easy to
get down. I try and tell myself that this is "normal" for me in the
winter time and I am lucky that California harldy had a winter in the
last 2 years so I was pretty lucky! I have a lap top computer that I
keep on my bed so when I am bed bound I can still do stuff on the
computer. That makes things a lot better! Just remember to keep your
head held high and remember that it will be over with soon! Then you
can put your wheelchair away for a while! Spring is on it's way and
then we can all feel a little better! Do you live on your own? Are you
married or do you have a mate? I know it is much harder to deal with
this when you have a loved one you are trying to keep up with. I was
lucky enough to marry my high school sweet heart who was there through
all the tests and the final diagnosis. He is very patient and has had
to adjust to living with me. I love him dearly for it! Please write
when ever you feel like it. You always have a friend! Lots of love
~Mary

[Vera]

Hello Gretchen,
I just wanted to tell you that our 11-year-old daughter Hannah also
uses a wheel chair. I can not imagine our life without it because she
is only able to walk very slowly for about ten minutes until her feet
get so painful that she refuses to walk along. That means that she
manages to walk alone to school which is very close to our home and
she also manages to walk to the next bus stop, but walking longer
distances is impossible for her.
Hannah also needs the wheel chair when her class makes an excursion
and luckily her friends love pushing it and think that her wheel chair
is very cool. Without the wheel chair the whole class would have to
walk as slow as Hannah and it surely would be a stress situation for
her.
As we love to go hiking in the surrounding mountains we also bought a
buggy with big wheels. With that we can take long walks in the nature
together with Hannah and she enjoys spending her time with her family.
For short trips to town during the warm season Hannah uses an electric
bicycle. She is very proud of her own bike and it is great for her to
make short distances independently with it.
When Hannah was on a much higher dosage of Prednisone than that one
she is taking by now, she was able to walk even for nearly an hour.
That was really great but as a side effect she stopped growing and
although we have already minimized the dosage so much that she is in
constant pain again, she is growing very slowly so that I fear she
will end up with a height far beyond normal! I must confess that I am
worrying very much about her height.
By the way we have published some pictures of Hannah and her wheel
chair on the Tribe site (for friends only). I checked on the Tribe
site whether you are a Tribe friend of ours or not, we will invite you
to become a friend and then you will be able to see these pictures.
Hannah likes her wheel chair very much, she chose it in her favourite
colour blue and it looks very nice. When the doctors told us the
diagnosis nearly nine years ago, thinking of my daughter using a wheel
chair was a horrible thought but now I am thinking very positive of it
because it is a real help for our daily life. Just imagine that
Hannah's younger brother was very jealous when she got her new wheel
chair and he said that he also wanted to have a wheel chair for his
own! He then got a new bicycle for his birthday and he was happy again
but he still likes taking a ride in Hannah's wheel chair although he
is perfectly healthy!
Hoping so much that you are doing well!
With Love,
Vera and Hannah

[Lauren]

Hi Gret,
How are you chooky? I hope your pain has eased off for a little while
at least.

I agree with Chris, Mary and Vera. It is easy to try and do it all by
yourself, refusing help and remaining stubbornly independant.
Sometimes it is hard to accept help - but please remember... you do
have a disability, so during the times when you are trying your
hardest, but the pain is simply overwhelming, it really is OK to ask
for help, or if necessary, use a wheelchair.

I try to remain as independant as possible by driving myself and
walking whenever i can. Although over the last few months (especially
in winter) i have had to admit defeat occassionally and use a
wheelchair when i go out shopping with my family. They can go shopping
for hours at a time, so when my pain flares up my options are either:
1. to use a wheelchair - which means being comfortable and actually
enjoy the whole day (although i tend to end up holding more bags than
any of my sisters just because i am sitting down!!). OR
2. I try to walk - when the pain is at its worst i only last an hour
at the most, whilst getting slower and slower. I end up not enjoying
myself, but rather asking to go home early because i am on the verge
of tears and can no longer stand the pain. Then just to really rub
salt in the wound i endure a night of hell paying for pushing myself
to far and too much earlier that day. Sometimes the next day is also
ruined by agonising pain or from lack of sleep.

In fact I was out with my mum this week (just to get out of the house
and have some fun), i lasted about half an hour before mum suggested i
hire a wheelchair because i had uni the next day and i didn't want to
be up in pain all night long. I had a great day and really enjoyed
myself instead of having to sit down every 20 mins to rest my legs or
take more pain medication than i wanted to.
I guess what i'm trying to say is that only you know your body and
your pain best. Only you know how much you can tolerate and do before
you reach your limit, or ultimately crash and burn. Unfortunately this
is also a condition that doesn't reward stubborn endurance, if
anything i find i am penalised more often than i am rewarded. So if
that means using a wheelchair to help you achieve your goals for the
day, or accomplish what you need to do, then use as much help and
support as you possibly can. It is there for you to use, so please use
it to your advantage!!

I've had a rough time lately also, so i understand how you are
feeling... I've recently changed one of my immunosuppressants (for my
transplanted kidney) and blood pressure medications so i have endured
swelling in my feet and knees over the last few weeks (my left foot on
monday resembled a soccer ball more than a foot!!). Thankfully we have
halved the dose this week and the swelling is slowly going down. I
couldn't go to Uni when the swelling was at its worst, though i pushed
myself to go later in the week (and paid for it that night). I've also
had that stabbing pain (just below my knee) in my shins of my left
leg, which no medication seems to help. My spine has also been
particularly painful, causing the muscles around it to spasm for hours
at a time. Thankfully we are due for some sunshine next week so i am
hoping for a reprieve from the pain (we have had constant thunder
storms here lately which give my legs extra agonising pain). I know
this flare up will eventually calm down and i can get back to living
my life the way i wish. However, in the meantime, i will use a
wheelchair when i go out and i will ask for help when i need it, till
i get back on my own two feet.
Hang in there Gret - try to remain positive, enjoy yourself, have a
laugh, smell the roses, and wait for the sun to shine again. We are
all thinking of you and wishing you all the best.
Take care,
Loz