I can relate to this

joyfulsufferer

Okay, so 97 in May is a little out of the ordinary.

When the previous days forecast said close to 100, I foolishly thought it was just another time the media moguls were not going to be right.

Trying to move and walk in any other than an air conditioned environment made me weak at the knees.

–Walking from the car to the store slowed my speed down to that of a turtle… The steamy hot surface of the recently re-tared parking lot made it seem even slower…

–progress was only slightly faster when walking with the aid of a shopping cart…

–my mood went into “poor me” as my mind could do nothing but think of what couldn’t be done…

–the simple act of dropping off a gift at a neighbors’ tuned into a journey to the center of the earth as I mapped out and tried to keep…

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Memorial weekend blahs

Finally settling in to living with MS
Only to wake up with something new
That would steal away my weekend
Keeping me prisoner inside the house
While swimming and barbeques ensue
My kids are concerned
I can see it on their faces
They are bored out if their minds
But won’t let me out of their sight
Truth be told, it worries me too
Having to concentrate to walk
Depleted of energy, nothing I can do
This too shall pass, as most often happens
I’m trying to hold it together
And not snap at those I love
The vertigo spins me around
Until I close my eyes
A wasted long weekend
Thanks to this disease I despise.

Very helpful

anothergoodday

I managed to get around to changing my header photo.   Not a big deal to anyone but me but I really like the colors in this photo.  This is just one of the many potted plants my daughter and her boyfriend planted for me a few weeks ago.  I knew I wouldn’t ever get around to it and they so graciously volunteered.  Its kind of funny (not in haha way)  how the years have changed things.  I used to be able to actually go get the plants,  get the potting soil,  plant the plants, and water them in the same day.    Whoo hoo.   Not so much anymore.  But thats ok.   Acceptance is an ongoing process,   I do what I can.  There’s no use in spending a lot of time on ‘used to be’,  when I need to focus on what I can do today.

Anyway,  they did such a good…

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MS Caregiver Sharing

Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 

Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 

I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts

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Autoimmune Living

BBC News–Women with a range of conditions, including multiple sclerosis, rheumatoid arthritis and thyroid disease report dramatic improvements in their symptoms during pregnancy.

However many say their conditions return, or worsen, after childbirth.

Two clinical trials are being held in France and California. Researchers want to find out whether increasing levels of progesterone or oestrogen could protect women from relapses after childbirth.

The MS Society has welcomed the study but urged some caution. Chief executive Simon Gillespie said: “This is encouraging. Some of the research going on, particularly the research in France at the moment, gives a potential clue and a potential way forward on treatments but long-term use of hormones is problematic. It does cause risks.

Read more.

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Heat

So I woke up this morning with plans to enjoy this Saturday with no plans in any way I see fit. Started out with the pool, but unfortunately it was already 90 degrees at 11am. After about an hour the energy had been sufficiently drained out of me. The rest if the day I have layed around with only enough energy to mozy into the kitchen and refill my water bottle. Oh joy, summer is here in full force. Thank you, MS, for the intolerance to heat. But more importantly, I am sooo thankful for A/C.