CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

I'm in at 7am early! I'm glad get it over with

That’s something then. We be cheering you on

Thank you!

How's everyone else today?

Had to check if I’d had a moan today yet (I had) ground hog day. Just trying some cold gel on my joints. Pleasant distractions and helps clear nose at same time

Hope all goes well tomorrow @doadeer
I'm just back from a full day of Covid testing. It was ok, but I'm completely exhausted so am just going to have a lie down for an hour or so, though with my son doing his electric guitar practice in the next room I'm not sure I'll sleep!!

I'm trying to persuade myself to do a couple of tasks that has to be done this evening. (Stuff to recycling, bin to kerb, / make food for myself etc) and pain wise this seems too much. I tried to persuade myself in to the shower earlier but taking off my clothes just felt exhausting so I lay down to build up to it but not going to happen now as I know I need to eat and get the bin sorted for pickup tomorrow morning at 6.30am so I know it has to go out tonight

Good luck tomorrow @doadeer

Soft hugs to all who are in pain today, we can get through this 10 minutes at a time.

@NotanotherboxofFrogs

Good luck tomorrow *@doadeer*

Soft hugs to all who are in pain today, we can get through this 10 minutes at a time.

Yes 10 minutes it is. I can do 10 min not “another day”. Trying hack it out till 7 before opening the wine.

That's so tough @NotanotherboxofFrogs the exhaustion is horrendous. Is it better to attempt all in one swoop or stagger it?

Thanks for all your well wishes ❤️

doa hope it all goes smoothly tomorrow!

akire it really does feel like yet another thing. It’s ironic that I actually have been really wanting to find a job, it’s just the worry about it not being in my control now.

I never tried for ESA because I have arguably always been able to do the job I left. It’s not an obvious disability or limitation in that sense. So I’m worried they’ll see me as stroppy/not engaging etc if I say no to something like that again. But just because I can technically physically do something doesn’t mean I can do it as a job. It would be a matter of days before flare up.

I did remember I have a customer service NVQ from the job so maybe I can get something office based which would be less physically demanding

I hate that when every little thing feels too much frogs :( I often have to do one task and then just sit down again for ages. It’s so bloody depressing

Hopefully if you have a decent coach they will accept you need part time as have some limitations but we all know that’s not how it happens.

I’m always grateful I am on ESA (support group) but I know also it’s some luck in all that and I could be badgered to “prepare for work” even though there is no way I could do work most days and certainly not On a time demand basis.

It’s honestly like a lottery with these things isn’t it. At least I have evidence that I’m making an effort with a long term plan.

I think DH is in the support group. His conditions aren’t going to get better so we’ve basically accepted he won’t be working in any big capacity again. Mum even said a while back that I shouldn’t think about work as one day I might need to take on even more at home but TBH that just made me feel even more determined to try and do something while I can. Mental health wise more than anything.

I’ve started thread on CBD oil if anyone has anything to add. I know nothing!

Didn’t know two adults were ill Sky that must be whole heap challenges. Some days I kid Myself I could do something but then I have weeks were I spend most of trying get back to sleep and feel awful.

Well blood test actually happened today after 2 cancellations and apparently she's on home vaccination list for next week. Yay. Meanwhile she's had a shit night and is in dreadful pain. I'm going to let her rest now until she calls me ( we use a doorbell)

That's great she's on the vaccine list Soover. Sorry she's in so much pain though.

High pain day today. Another medication drop yesterday and as a result had very little sleep but on the plus side I'm down to 3 quarters of the dose - yay!

Fantastic she’s getting the jab at home!

Progress is progress badger 💐

I know nothing at all about CBD akire it’s often mentioned on autism and adhd groups too!

Yeah DH had a back injury a decade ago, had to stop work for a while (which is why I ended up with my job). He then had surgery and was back at full speed (literally - he even did 24h running events!) for a few years. Then it all went to shit. He’s now diagnosed with degenerative disc disease and his spine issues can’t be operated on because of the previous surgery. He also has osteoporosis which his dad also got quite young (they reckon DH’s strength from running etc helped stave it off). He’s trying to get other pain investigated too but he’s getting shrugged off by everyone. It’s likely that much of it is due to childhood injuries (he was horrifically abused) and the combination is just awful for him :(

Tbh we just balance everything somehow. It’s like we take turns being the more ill one! Really my health is a lot better than his now, his pain is more intense.

However it’s also a reason I’m scared of working in a job that makes me ill - will DH run himself further into the ground taking care of everything at home, what if I have a severe relapse again? It’s fine at the moment as my flares don’t usually last more than a day or two but pushing myself to work will have much bigger consequences.

@doadeer

Ow Medusa! I hope you're OK, does this happen a lot?

I'm having the worst fatigue I've ever had... Just a heaviness across my eyes so strong.

I worked this morning and thank god I managed to get what I needed done.

Tomorrow is when they burn the nerves - I'm very nervous but I can't go on like this. I hovered for 3 mins and I was sweating with pain 🙄

Not a lot, thankfully. I'm usually fairly good at knowing if I'm pushing myself too hard, so can stop before I reach sublux stage. But sometimes it's not possible, and unfortunately it also makes me more clumsy. I'm ok today at least, sore, but not as bad as I was expecting. My DC told me that it scared them when I feel though.

Some good news though, just had my vaccine (in the arm that isn't bruised from the fall). So that's a weight off.

@SingToTheSky

doa hope it all goes smoothly tomorrow!

akire it really does feel like yet another thing. It’s ironic that I actually have been really wanting to find a job, it’s just the worry about it not being in my control now.

I never tried for ESA because I have arguably always been able to do the job I left. It’s not an obvious disability or limitation in that sense. So I’m worried they’ll see me as stroppy/not engaging etc if I say no to something like that again. But just because I can technically physically do something doesn’t mean I can do it as a job. It would be a matter of days before flare up.

I did remember I have a customer service NVQ from the job so maybe I can get something office based which would be less physically demanding

That's always difficult- they expect disability to be consistent or obvious. Not understanding that being able to do something on one day doesn't mean you can do it another day, or that doing something on one day actually reduces your ability to do the same the next day.

Exactly. And when pain/fatigue is the main symptom people don’t believe you anyway because it’s so subjective. It’s easy for people who don’t experience it to just think we can’t possibly be SO tired or achy

Morning I'm out of theatre. Feel like I've been kicked in back by a horse haha. Doctor said he burnt tons of nerves but this weekend will be rough. Had to move my covid vaccine as the steroids I've had mean my immune system is compromised and vaccine might not be as effective but hopefully only a week or so out. 🙏🙏

@doadeer

Morning I'm out of theatre. Feel like I've been kicked in back by a horse haha. Doctor said he burnt tons of nerves but this weekend will be rough. Had to move my covid vaccine as the steroids I've had mean my immune system is compromised and vaccine might not be as effective but hopefully only a week or so out. 🙏🙏

Glad you are out. Was it as bad as you were thinking?

Had rubbish night, I can manage in day till
About 7/8pm then all my resolve seems to go and I’m done. Drinking far to much as need something else and meds I have give similar side effects anyway. Not long term but when there’s nothing else can see why people turn to street drugs

@doadeer well done. Hope you feel okay

Well done doadeer. I hope the weekend isn't too rough. Probably as well to delay the covid vaccine until you're feeling better anyway, just in case you get any side effects from it. You wouldn't want to be suffering twice over.
I've got my vaccine tomorrow - slightly anxious about it but glad to go really. One more step towards "normality" with a bit of luck.