Great big long VENT

[Thinkimjob]

I've learned (the hard way) in the last week or two, that I have been a bit of a whingeing sook in years gone by. Always thought things were bad, but bearable.
Now, I think I know what bad actually means, MS wise.

Clealy this is a flare.

I thought, oh Lord I can't walk 50 yards, now I can't walk without a wheelie walker at all, and I'm still exhausted after ten yards.
Foot drop? Thought I had it, but now I realise real foot drop is way less fun than a numb foot and the need to wear supportive shoes at all times. The wretched thing turns inwards, and weighs a ton.
Plus side, can't feel a thing. Another plus side, not peeing my pants. Can't feel much down there, either.

My left hand is dead to the world. I can stand unsupported for as long as it takes to lunge from from one solid object to another.
If I have to get something out of the fridge, I need to sit on a chair. If I bend over my heart races, and I feel like I'm going to faint. Can't roll over in bed without grabbing the bedstead. Shower? What shower? They never seem to wash much in The Walking Dead.

I know the first rule of medicine is "do no harm". I am not allowed steroids, in case my aneurysm bursts, but honestly, I don't care!
It is a risk I am willing to take, as an adult with most of her faculties intact.

It does feel better just writing it down. At least my bf is nice.

[annedocuk]

I hope you are not assuming there is nothing that can be done because you are obviously very knowledgeable about the disease. However, let someone else take that responsibility and discuss it first before making assumptions. Good luck, which may be more use than standard medicine!

[JerryD]

Think, I get what you are saying! I need to use my 'rollator' for every movement I do ! I 'rollator' over to my fridge to get a glass of cold water. When I pour the water, I sit on my rollator between getting a cup and reaching into the fridge. I know the feeling!
There's one thing to do. Be grateful! For every small thing ! Express gratitude to everyone that shows you kindness ! That's all that we have ! Good luck

[REG53]

I can definitely relate and I am so sorry you are having a bad flare. I had to have PT at home to get me walking again with the help of a rollator.

I hope the flare doesn't last long but you may need PT.

Praying you feel better soon.

[KatieAgain]

It is very clear you are in a flare. Oh Sucko!

And you do have an option.

Have you rethought Tysabri for the 100th time. Although I have had two flares on TY...it would have been much worse without it. It pulled me out of that God Awful flare I was in when I first went on it.

I rarely just flat out recommend a med, but what do you have to lose? PML is less likely to happen than the aneurysm. Seriously. In fact it rarely happens prior to two years on TY. Maybe this is the two years you need. Two years of potential goodness. Try it for eight months and go off if you don't see improvement.

Give some consideration to it. Your options are running out here...and they are running out quickly. Hate to be blunt, but I care for you.

[palmtree]

You've been so bravely trudging along. Going to work. Living life out there with your wheely walker.

I'm sad that this disease has got it's grips in the worst way. I hope very much that this is a flare that will remit. You say you are secondary progressive. So am I. But I don't think they really know what stage we are in. You could still be in RRMS. I hope so.

They won't give you steroids because of the aneurism? I don't understand why. It might make your blood pressure go up but that's all I know of.

I sure understand your feeling that you should be able to make your own decisions about your health. I hate it when they treat you like you have alzeimers or something. "You've told me the risks but this is my choice." End of story!

[Marie12]

mm, steroids, there is hope for me. I forgot how nice I felt

It is difficult, but I, me, myself, has to figure out what to do to help me. Married 40 years in December, but he has no clue.

Hm, 4o years, oh well _ _ _ _!!!!!!

[SEAMSGUY]

Thank you for venting, Think. But it's more telling all of how your doing than venting. I wish I had something to suggest, but some above have good suggestions.

I/we care about you and I feel so bad that you are in this place. I will pray for you.

S.