For those in pain to pass on to family and friends

[Anonymous]

thanks for bringing this lovely piece of advice ‘up to the top’ again. can it really be 8 years since i first read it!? love to all, annie x

[AmandaParticipant]

To all recently joined members of Pain Support and of course to the existing members. I think we all could do with a reminder of this wonderful letter explaining our pain.

[MarrietteParticipant]

As a newbie I’ve never seen this before. Thank you for reposting it and to Sheila for the original post.
I shall be showing it to a few people who need reminding how lucky they are.
Much appreciated.

[ChampagneParticipant]

Hi everyone

It is so strange but before reading this post I had spent half the afternoon looking through old copies of the Fibromyalgia Magazine for “Love Letter to Normals”. I was out with two friends yesterday when after only about one and a half hours I had to say “I am sorry we will have to go back as I have started to feel really unwell”. It took about another half an hour to get them to the cars by which time I could have cheerfully have lain down on the car park as I was so tired and in pain. On the way back she said “what actually is wrong with you” and “how does it affect you”. When I tried to explain I feel although she is a really good friend she didn’t understand and probably thought I was exaggerating. Hence looking for the article to give her the next time I see her in the hope that if she reads it she might not be able to walk in my shoes but at least might understand a little bit better what it is like.

[Jan SadlerKeymaster]

Bringing to the top for Giles86

[FritzParticipant]

Just thought I’d add my diverse range of debilitation to the discussion..
When my meds are all working and my back is moving well, I can play 2 hours of ice hockey and feel brilliant.

When the meds aren’t working and my back is locked and the nerve root compresses, I can’t walk for more than 10 minutes.

You can imagine the comments I get from the wife when I’m all locked up and immobile.

[susieblueParticipant]

Hi Sheila:), I’ve just posted this on my fbk timeline, thank you so much. I am so tired of my family, especially my husband looking at me and saying you look fine, you did this, you did that, why are you not okay now comments:( Your letter explains it perfectly and I’m just hoping now my friends and family don’t take offence with me posting it and maybe give it a bit more thought. I’ve found that 11 years down the line everyone seems a bit bored by it all:/ at the beginning after a major head on car crash everyone was amazing, couldn’t have been better but I feel very alone and isolated. Even my GP practice told me to not bother going to them with anything pain related as I was far too complex for them:/ so when I fell down the stairs I rang my pain consultant only to be ignored:/ that was two years ago and I now just deal with things alone. I am thankfully though in day 8 of trial scs implant and am scheduled to have the full implant 24th April as one of the leads has had a huge impact on controlling the pain in the ribs:))) sadly the lower back/hip/leg lead has done nothing to ease the pain but I’m happy with any relief:) Thanks again for the fab letter:)

[trishj46Participant]

I can understand how this letter needs to be read by many people. However I must say my family are outstanding as far as understanding, empathy, concern. Do not know what I would do without them! In last few years my brother & sister alone have taken me to more then 200 all kinds of appointments concerning my health! I could never thank them enough! Yes, I have lost friends and others in my life, but find they were not true friends to begin with!
I understand all your comments but just wanted to add my family and most people in my life don’t need to read this letter! I am grateful to them & God! Thanks for listening!
Hugs!!!!
trishj46

[KateJParticipant]

Thanks so much . I will show him this. Not sure how receptive he will be but I can only try! It’s nice to know there is some support out there not just pills! X

[Lisa jParticipant]

Thank you so much for posting this!! I am so frustrated, angry and depressed because my family and friends keep telling me how well I was the other day and expecting a good day to be conclusive evidence that I can do it all the time and I’m just letting myself get lazy. I have been considering suicide because of the intense emotional pain that this is causing me and I too, cried when I first read it. I will copy it down and pass it to friends and family. I don’t know if it will help but at least il know I tried. Thank you again xx

[ChristineParticipant]

Thank you I found this very helpful as I have M.S

[graciesgirlParticipant]

<3

[anniekatParticipant]

I thought I’d bring this thread up to the top again for our new members. Such good advice!

[anniekatParticipant]

Aargh! Now I see that Jan has had the same idea!

[graceParticipant]

Wow this is so well said I completely relate to all of it

I too find it annoying how if you’re coping better one week with the pain you get less attention because people think “but I thought you were getting better” so one week I get loads of sympathy and help then after a couple of weeks it’s like it never happened as people don’t understand how you can be ill but for it not to go away, for it to be chronic

I also get endless “advice” (but more like judgements) about what I should do to change my life. I need to try “x and y” but I’ve already tried all those things and you have to sit there listening to it so saying yeah, yeah okay I’ll try that..(knowing it won’t work) or yeah, I’ve already tried that

It’s like people don’t accept that you can have an illness that is funnily enough not your fault and not anything you’re found wrong!! My diet has always been healthy and to the suggestion I should give up caffeine…I don’t even drink caddies anyway!!

The idea that you should just “ignore” the pain or distract yourself…I’m trying to do that all the time!! That is my life!!! It’s like people don’t think I’m trying to do that??? But it’s pain! If they were in pain they would also be as depressed as I am because it really isn’t something you can just pretend isn’t there…some people seem to think that distracting yourself or keeping yourself busy is the same Althing as the pin not actually being there. Not the same thing.

Thanks for this, really well written and helpful

[Author]

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