hubby wanted to go out and i couldnt..now i feel sad :(

[hurtingallthetimet]

[/B] hubby wanted to go out and eat and of course i didnt feel like it...and the more i think of it the more it makes me sad...hes pretty understanding...but i still feel bad..its hard because my extending family doesnt understand and my sister is talking about coming to see us..which id love..but i know it will be exhuasting just having more people in the house..just keeping up a conversation is exhausting most times..

but i think because i look so fat and healthy to my sister mother etc. they think i should be able to do things i use to and i know i cant and ive told them this so many times but they just dont get it...

since being ill i sometimes find myself looking at others if im out or even watching tv and wonder if maybe someone else who looks or acts normal is living in pain or whatever it maybe..when i do get out i try hard to hurry get where i need to be and hurry home to colapse...my family doesnt understand what pain i am in when i do something....and im always exhuasted...my doctor pushes for me to walk or get out more...but they dont understand that i feel dead..how i cry and dont sleep all night before simpliy grocery shopping the next day..the panic attacks..the anxiety...the phobias...they dont understand how doing waht use to be the easiet of things is so very hard now..

i have to take morphine to walk around neighbourhood..ive done that maybe 3 or 4 times this year...i use to jog every single day for miles..on top of working, taking care of family a busy social life..now i take morphine to walk i hate that..

just needed to vent

 

[*GG*]

that sucks, sorry you feel this way. How long have you been ill?

GG

PS What are your repercussions from a small walk?

 

[Boule de feu]

In February, my very dear old friends paid me a visit. It only lasted 3 days but it was enough to make me relapse. Big time. I am still in bed a month and a half later and it seems that I can't get out of this one. Ended up going to my GP which was not planned until June. It's a shame because I really enjoyed seeing them after all these years.

Please be careful not to overdo. You seem to push yourself quite a lot. Can they sleep in a hotel?

 

[SickOfSickness]

I am sad for you too

Try and come up with ways you can participate. Say hubby pushes you in a wheelchair most of the time. That way you still go out together.

I know it's hard. At least he's pretty understanding.

 

[hurtingallthetimet]

thanks for the replies everyone...sickofsickness im not in a wheelchair hopefully it wont get to that point...ive been told by doctor if feeling "ok" to park a little from store so to get at least a little exercise but also told if not feeling well to get handicap sticker to park closer..but ive seen many stories of people being treated badly for looking normal and having parking sticker and even overheard others making remarks about people who looked normal using parking sticker spot and being treated badly for it beucase they look normal..i dont like any attention at all i have soical phobias so far i just tough it out..theres been times ive had to get grocerys for family, take kids to appt, etc. and felt like i was going to die and then come home and lay down and take medications...i know theres lots of people just like me...some worse off..

gg like most it varies as far as what i feel like after wallk...since on the morphine its not as bad walking because im sedated...afterwards im always sore though and sometimes crash...but the morphine has helped more than anything in a while and im grateful for that...i just have to really let go of what i use to be able to do i guess and i hate the fact that i cant take a simple walk without morphine...i hate that i cant spend time with my family like i use to...but as i said above i know some people are worse and i should count my blessings..

boule sorry to hear about your friends visiting and you crashing...i hope at least while they visited you that you had some good memories and some fun..i hope that you feel much better soon

..its very very hard to do things..even when you force yourself..im tired of having to force myself to do things...i see counserlour usually twice monthly and they have helped so much but just doing something twice monthly is exhausting and i mentioned it last visit and goiong to do it less..but its just the fact that i can no longer do what are simple things without being medicated..or crashing afterwards...i just want to be normal again... i am lucky my hubby is pretty understanding..he sees how much pain and fatigue i go through and it helps that he understands..

 

[SickOfSickness]

Yeah that's how I am too. I don't want to stand out. I never needed a wheelchair, but if I didn't mind people looking at me, it would help. I read that before about using handicapped spaces. I doubt wheelchairs draw the same bad looks. People would assume you need it or wouldn't be in it. (The exception is if younger kids were laughing and having too much fun, then you assume they don't need it.)

 

[Boule de feu]

I never requested a handicapped parking pass since I had to give up driving when the vertigo started and now that I get a ride every time I need to go somewhere, they just make sure they drop me off at the door. I'm so lucky ! ;-)

But a very odd thing happened a few days ago when I went to see my GP.
I guess I looked very very awful when I got out of the office because the receptionist there asked me if I needed someone to walk me down to the lobby. Then, another patient said: "Tell me where your shoes are, I'll get them for you". Another lady got up and said: "Wait ! I will open the door for you."
It took me off guard and I had no clue what to say, except: "No, thank you. I'm fine. I will manage."
It never happened to me to me before. I guess they can tell now that I am sick.

IMO, too much attention is also bad. I don't like it.

 

[*GG*]

that sucks, sorry you feel this way. How long have you been ill?

GG

PS What are your repercussions from a small walk?

The reason I ask, was I was really bad about 2.5 years ago. Massive pain of 9 to 10, had lidocaine infused (knocked pain down 2 to 3 notches) into my blood stream. Never been on morphine but my Neurologist had been ramping up my pain meds, due to increasing pain. I think i was on a slippery slope to worsening my condition even more. I was on Fentanyl, and went to my Dr to be excused from work while I got better. He told me that Fentanyl is what they give dying cancer patients, probably the same as morphine.

I was a little depressed also and really didn't feel like doing much, when your in that much pain, I can understand. But I eventually pushed myself doing small walks, and slowly got better and went back to work after being out for nearly 3 months!

My pain is much better now. I just used the heavy duty meds to kill the pain when I needed it. And took a lot of over the counter pain meds, for headaches also. Last year I did a lot of trigger point injections with massages also. I feel my life is more in control now and only work part-time.

You want to do something for inflammation. I believe Fish oil is good, and I learned on this Forum that you can get it as a prescription. I also do Chlostryamine which is supposed to remove toxins and reduce an inflammation marker. Have a Drs' appt tomorrow, so will find out how that is doing.

GG

PS Hope you find some relief soon, and you keep a handle on your pain, because the pain will cause a flare up if you don't keep it in control.

 

[hurtingallthetimet]

hello gg...sorry i meant to reply to your question how long i was ill in other post but had forgot to by time i had written and post it..

ive been ill since 2005 wasnt as bad then of course..i worked as long as i could...actually for quit a long time..id cry at lunch in my car or go in bathroom and breakdown..the pain and exhuastion were horrible...i
saw doctors and specialist..had test..physical therapy over the years...but never got better kept getting worse and worse.

.lowest point was not being able to work and provide for my kids..id always given so much pride in helping to provide for them i felt like a faliure when i coulndt anymore..i really think i had a nervous breakdown..it was such a hard time for me...i really really thoguht id take a month off at most and get a less stressful..easier job...id gotten diganosed with fibro/cfs but what id heard about it was it was from depression...and i was told id get better...but i havent as i said i only got worse...finally i found a great knowledgeable doctor from support group i was on...she has helped me so much..but with that knowledge i found out that i really was as sick as i felt..it wasnt in my head or just from depression...

ive read where people hit a point that for whatever reason they do plateau {spelled?} stop getting worse..or maybe even get some better...maybe more research will be done and a cure someday...we can only hope i suppose

 

[Ivana]

hello

i'm so sorry u have to go through this, i really feel for u. if it helps, ur not alone.. my partner always comes over and we just sit here because i cant go out.. sometimes i try and get sick in the last minute, so we end up staying in and i cry for the rest of the night. my parents rarely leave the house because they dont want to leave me, and my sister is always out, whilst i just watch her come in and out from my couch. my uni friends all graduated last yr, i didnt get to finish, and are now working and travelling.. and i'm still at home. the reason i told u all this is so u know ur not alone, i always cry too when i cant leave the house.
best wishes xx

 

[roxie60]

sorry you are feeling down. Im also glad you have an understanding hubby. I know it feeels awful to want to particpate and be with loved ones but it stinks to have to make choices between time with others and potential colapse and recovery. Im faced with decision tomorrow, let significant other go on 4 hr trip by himself to be with his daughter and grandchildren or go with him when I dont feel well and add stress to my body. I have a precedure to endure Wed so this is a big decision. I want to go but would rather go if I felt well and it would not drain me.

 

[*GG*]

Hello Hurting,

I think it was on another thread, I think you were looking for some pain relief, my impression is that some medication would be the easiest route for you? Read this article and it mentions Ketamine. You might want to look into it.

Here is a ling to the article:

9 New Ways to Relieve Chronic Back Pain

http://www.lifescript.com/health/centers/pain/articles/9_new_ways_to_relieve_chronic_back_pain.aspx