Very low energy level.

[Mikek]

Jenny is now in her seventh or eight week of Wegs' treatment with Pred/MXT and seems to be gradually improving. She has nasal blood clots most days and poor sleep which we understand is to be expected. The two symptoms that are bothering her mostly are 1) The shakes and 2)Almost total lack of energy. It should be remembered that just a few weeks prior to having the ear nose surgery that resulted in the Wegs' diagnosis, she had a major abdominal surgery. With Spring just around the corner, she wants to get actively gardening and is finding that a ten minute stint outside is all she can manage. What can be done so that a gradual return to normal activity can be achieved or attempted?

[Dirty Don]

She's had a couple of 'life' hits very close together...I did mine in a similar fashion. Anywayssss, it took my body and my brain about 6 months to start getting their respective acts together. That said, my recovery keys have always been from the start of all this: a) patience in all that I endeavored, b) follow all, well most, protocols once established faithfully, and, c) relied on others for support and info. As of today, two years later, I feel as well as I have in a very long time (quarterlies were all normal today!), so I've been very lucky in so many ways. Jenny is on the right path, just be patient and steadfast. Best to you.

[annekat]

In my seventh or eighth week of treatment, I still had very low energy level. 10 minutes in the garden is about all I could take, too. It was hard to walk more than a couple of blocks, and I needed people to help me unload my car, stuff like that. Now, after two years, I am so much more like normal it is like night and day. But it won't take 2 years to get a lot of her former energy back. As for the shaking, I remember that, too, mainly in the hands. It is probably from the drugs, and it went away when dosages were lowered. It sounds like Jenny is doing fine! I hope her spirits are good, pain is minimal, and that she allows herself to sleep whenever she can. Insomnia is awful, and let's hope that a lowering of the pred will do the trick.

[Mikek]

Thanks for the encouraging replies. We plan to have a road trip tour in August and September when she will just sit in the car and admire the scenery.

[Barry Forshaw]

I know 8 weeks feels like a long time but in Wegener's terms it is still very early in Jenny's treatment. It's a good sign that she has the desire to be more active! Patience is the key, especially so soon after major surgery. Try doing a little more each day where possible which is good for morale and makes you feel like you're moving in the right direction, but - if your body says no then you have to respect that and stop, otherwise you risk doing more harm that good.

All the best for Jenny's recovery.

[vdub]

I'm in my 4th year and still don't have much energy. Even when I am on super steroids (as I am now), my energy ebbs and flows. It's very inconsistent. Some day's, I'll be fine and other's I just want to sleep. Her lack of ambition could be due to depression as well, so you might want to get that checked.

[Alysia]

I'm in my 4th year and still don't have much energy. Even when I am on super steroids (as I am now), my energy ebbs and flows. It's very inconsistent. Some day's, I'll be fine and other's I just want to sleep.

same with me after 5 years of WG :sad:
Im getting more and more tired as the day progress, like my "battery" is getting empty.

Mike, please notice that what you consider to be something which is easy to Jenny, she may experience as exhausting. ask her about traveling and if she can stand it.

I find it hard to explain to people how it felt to have this fatigue.
they dont really understand it :crying:
but my weggie friends here in the forum do understand :thumbup:

[annekat]

You are so right, Alysia, that people don't understand this fatigue. They see us appearing to function normally in the world, even being energetic and upbeat part of the time, so we seem OK to them and they don't take it all that seriously when we mention the fatigue. I mean, everyone has fatigue, right? But is is serious, and if we don't pay attention to it and give ourselves the rest that we need, we will get sicker. Of course, there are other illnesses where people go through this, and have good and bad days. But this one being so rare and unheard of by most people, it goes in one ear and out the other, especially if we are seeming fine at the moment.

As for Jenny going on a road trip, it might do her a lot of good, if she feels up to it. Mike says she would just be sitting in the car seat and enjoying the scenery. By later in August or September, she may feel enough better that it is doable. I'd hope that some part of the vehicle is comfortable enough for a nap, and lots of stops in overnight accommodations are planned! The less stress the better.

[drz]

It took me over a year before I could do relatively simple things like a flight of stairs with out wheezing or having to rest on the landing half way. At two years or two and half I felt about my best. Then things got worse with several infections and as my neuropathy progressed, walking became more difficult and took more effort so I fatigue easier and can do less now but compared to early treatment days I am a remarkable ball of energy when I used to take wake breaks for a half hour or so between naps. Enjoy what you can do and accept your new limitations as being variable. Some days seem better than others. Most of us got better with treatment but many do not return to their pre- illness level of endurance and energy but just become happy to enjoy what we can do.

Things do generally improve with treatment but it can take awhile and there are likely to be set backs along the way.