Needing to vent

[Swb21188]

These are my thoughts. When you first get diagnosis those around are concerned and on board with understanding but as time passes it becomes as a matter of fact and they stop seeing it or not see it to its full extent. Just recently my partner commented how I have the Weg thing beaten. I chose to allow him this sense of security because the last thing I want is for him to be on permanent alert. I do agree it is frustrating and yet again something we have to deal with.

[vdub]

The main thing is that Restorative Sleep is absolutely essential to surviving and reducing meds.

Interesting you should mention this now. I have been feeling really good for the past few weeks (almost months now), but I have been through this up and down cycle too many times to know that the up cycle doesn't last all that long. Yesterday, I didn't get up until 0800, by 1000, I had decided to go back to bed and lay down for a while. I ended up sleeping until 1800, got up ate a bit, then went back to bed and slept until 0500 this morning. The "sleep crash" happens ever so often so my wife is used to it at this point. It seems to happen every 2 or 3 months where I just go to sleep for 36 or so hours. I don't really feel bad, but I just hit the wall.

[Jaha]

My mother is really hard on me with the criticism also. I always say it is like her taking a knife and stabbing me in the heart. When I was first dx'd, she told everyone that I had some sort of lung disease, because I was a smoker at that time. I tried to work for all most 4 years and was getting to many infections and hospitalizations, being in the healthcare field I had to quit. I think we all have friends and family who do not bother to listen to us or read anything about this unpredictable, ugly disease. I am sorry Lily that you are having undue stress and hope things improve for you.

[drz]

I think many people misunderstand our need for flexibility and uncertainty about our ability to keep appointments or follow through with planned activities. They assume we really aren't interested or don't want to do a planned activity when we tell them we have to wait and see how we are that day. Some days we just don't have the energy to get out bed let alone go to some planned social activity with our friends or family. Learning to be flexible about our plans and activities is one of the most frustrating things about having Wegs. We often don't know what we will be able to do on any given day or time till it arrives. i have slowly learned to husband my spoons and rest up ahead of time if there is some I really want to do in order to increase my chances of having enough energy to do it.

[vdub]

I think many people misunderstand our need for flexibility and uncertainty about our ability to keep appointments or follow through with planned activities.

Wow, I thought I was alone with this issue. Not that I'm glad its a problem for you to drz, but I'm glad I'm not alone. Misery loves company and all that. I sometimes think my family believes I use the disease as an excuse to not attend something at the last moment or to refuse to commit to something days out. I did commit to hosting T'day dinner this year (along with my wife, of course), but doing so was going out on a limb for me. I'm still feeling welll and think I'll probably slide through ok, but I had a marathon sleep time (about 24) the other day. I think it will be ok. I guess others must have the same issue, eh?

[MikeG-2012]

Wow, I thought I was alone with this issue. ... I guess others must have the same issue, eh?

Trust me, you two aren't the only ones! Unfortunately, I'm only 48 and not retired. So, when I am having one of those mornings, I still have to drag myself out of bed and go to work. One day this week, I woke up with major joint pain, so I took a pain pill, emailed my boss that I was coming in late , and went back to be for two hours. I am glad he gets me, knows my work ethic and knows what I am going through. It is really cool to have great boss who completely understands and gives me the flexibility to take time when I need it to recharge.

Speaking of work; sometimes, I wear myself out at work during the week, and it upsets me that I am not able to do more on the weekends, but rest up for Monday. Work, rest, repeat... <sigh>

[Alysia]

Oh, yes! I think all of us understand what you are going through. One of our biggest complaints is always hearing "but you look so good". Yes, we look good, at least, until you have been on pred for 5 years.

hmmm 8 years on pred and still looking good...
And my sweet Phil was 11 years on pred and he was the most stunning beautiful gorgeous good looking man I ever saw .... ♡♡♡♡



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[Alysia]

I dont expect a non weggie to understand how I feel. I even prefer to wear "the mask"...

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[vdub]

he was the most stunning beautiful gorgeous good looking man I ever saw

Obviously, you have never seen me.... Quite stunning if I do say so myself! :-)

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[Bing505z]

I love to work also and believe that staying active is key to staying healthy. You also need the support of your close family and loved ones. So Lily, you may need to sit down with your family and remind them that you really need their support.