Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Hey arti, glad you've popped in :) and welcome daisy too!

I'm not feeling so terrible today - my shift was pretty easy as half of it was spent preparing the craft activity I'm running on Saturday and the other stuff I did was seated too - and I got a lift home.

Interesting about the vitB12 injections. I know people who have vitD injections too, or prescribed high doses. I have just started taking vitamins again - I've been taking a multi with iron for a while, but I bought vitC+zinc, B complex and vitD. DH (who used to run a pharmacy) says you can get some vitamins prescribed so I'm planning to keep taking these and see if they make a difference, then ask my GP for some if they do. I know no supplement can be as good as a really nutritious diet (which I am hoping to achieve by planning more varied meals) but if it even helps a tiny bit it will be worth the money IMO.

Hi Fuzzpig. If you take anything like omeprazole, (for irritable bowel or alongside a NSAID for example), this can inhibit your absorption of vitamins and minerals via the oral route as your stomach need to be quite acid to absorb them and omeprazole reduces acidity ( so my GP told me!).
I get my b12 injections prescribed.

Hello newbies to the thread. I'm low on spoons at the moment. I'm going to get an early one tonight.

Welcome Daisy & educating

9.30 - 10 is a late night for me. Most nights I'm in bed by 8!

I'm eating everything in sight.

As a treat, I'm staying up till 10 for the Apprentice.
Are you due on, Grockle? I would happily eat my own family in the days before my period.

Hi,mind if I join in?
I have Hypermobile Joint Syndrome and suspect I may have POTS too but haven't been diagnosed. All additional spoons gratefully received! Xx

Welcome BendyMum.

Thank you for the welcome.

Grockle - I sometimes work till 9.00pm so 9.30-10.00pm is the earliest I can manage. I often sleep all afternoon for several hours though on Fridays, Saturdays and Sundays which helps me catch up!
I usually don't start work till 10.00am though so have a later start than many going out to work or having to do a school run for example!

Daisychicken - I suspect I've had fibro for many years before it was finally diagnosed last year ( finally after originally going to see my GP when I had slept 20 out of 24 hours and decided that was beyond ridiculous). I actually feel quite relieved as it gives me a reason why I can't do as much as others. I don't feel as bad about saying no to things as I used to!

Ages ago, there was a thread about where to find pretty looking crutches. Has anyone got any good website recommendations please?

Educating - I agree that having a diagnosis helps but my kids don't "get it" (ages 8 & 11), the youngest often says I'm being lazy. My ILs told me it was a 'dustbin diagnosis' and despite FIL seeing me in tears one aft as I felt so ill, they've never asked me how I am - that was 18 or so months ago... so I still feel I am having to constantly justify myself or make suitable excuses...

Hi All

Daisychicken, my kids where similar ages when I was diagnosed, I told them about spoons, I literally got 20 spoons out of the cupboard and said they had 20 spoons but ME meant I had 11, I then went through things like getting ready for school/work, 1 spoon school/work....etc by the evening I had 1 spoon and they had 9, so how did I spend that spoon, I think they got it, every now and then my daughter (now 11) asks me how many spoons have I got left!!

I AM FOOOOOKED today, I haven't stopped for nearly a month, doing things I don't usually do.. normal would be good right now!!

xx

I had an exhausting rheumatology appointment. The lovely rheumatologist (my usual less lovely dr is off sick) wanted me on short-term steroids and then anti-TNFs. I said no to the steroids as they affect my mood really badly and I'm quite low at the moment anyway. I will go to the next anti-TNF assessment in 4 weeks but I'm apprehensive. All these drugs come with side-effects, some as bad as the condition itself. She gave me a leaflet about the drug she wants me to try and I know they have to tell you what might happen but it usually makes me more worried. Going to appointments really gets me down. Irrationally, I always hope they will have the magic answer and of course, they never do. Oh well, at least I got a 'script for tramadol!

Hello all - low on spoons myself lately.

Wondered if I'd see you here, arti

Have been persevering with the relaxation (and other very helpful hypnoses on YouTube) - love it and it is helping with my state of mind a LOT.

Having to rest a lot lately - activity seems to cost more spoons lately. But can still manage the school run and a few jobs, so I'm not hopeless yet. Work is very quiet - I'm also freelance, arti, and not sure how much more I can do, to be honest.

I am actually, crash doll. I wonder if that's what it is. I also hope for a magic answer at my appointments & feel despondent afterwards when they can't do much to help me. I now have an appointment with an OT to see what adaptations they can suggest. They can't supply anything but can advise. They've also referred me to an exercise programme but that means a morning off work every week for 6 weeks in October & I don't think work will like that!

I spray painted my boring crutches, if that helps. You need to use a primer though. I like the crutches on glamsticks & blingsticks. There are also lots on ebay... I need to get new ones because I can no longer hold mine because my hand cramps.

Bendy, I am also hypermobile but was diagnosed in the US & have no diagnosis here.

Waves to Belle & building. Love & spoons to you all.

Hi newbie here, I have pernicious anemia for which I have b12 shots every 3 months, just found out My vitamin D is at 16 so have been prescribed medication for that as well, could this be the cause of my hair falling out and constant feeling of exhaustion? Doc says I might have Chronic fatigue and IBS ..I'm just tired of being tired all the time

Welcome

My hair falls out too. I always say I'm tired of being tired.

Belle - I showed the spoon analogy to my DH which did help (though he seems to think that on my good days I'm completely "normal").. I'll show it to my dc next time I get a comment, perhaps seeing it visually might help - thanks

Hi all and welcome to more newbies :)

I also get epically hungry when due on, although actually it hasn't been quite so bad the last few months. I wonder if that's because my overall diet has improved a bit - I still eat too much chocolate :o but I'm including more good stuff like nuts/seeds, berries, oily fish.

I am achy today having just got in from work, my knees and feet kill. Thankfully DH just made the bus from town (job centre appt) to pick the kids up as I'm really not sure I could manage it today! But I'm proud of myself - I've been worrying about some training at work that I'd been promised before I got ill, and understandably they haven't done it while I've had frequent absence, but now I'm settled at 16hrs I was starting to worry they'd forgotten or worse that they've decided I can't do it because of my illness (especially as they've started training newer people), but I was assertive and went to ask about it and my manager was very reassuring and said it will happen although not immediately (which is understandable). I was really starting to feel like I didn't belong there any more because of my illness, so I feel a lot happier now.

Sorry that was rambly!

I use the spoon theory with DS. I mage a 'spoonometer' which is like a petrol gauge with a spoon attached to the middle on a split pin. Every day, I move the spoon according to how I feel. So, if it's on the red bit, DS knows that it means I am really poorly & won't be able to do much & that he really needs to listen & help. On an orange day, I can do stuff at home & maybe something not far away and on a green day, I am a normal mummy. I never have green days

Good news about work, Fuzz. Well done.

I phoned the council today to ask about registering as being disabled. They're getting a social worker to come and assess me [worry]

Today I could cry I can feel a crash coming along and im doing everything in my power to stop it.my hands hurt, my legs hurt, my whole me aches, today is the 1st weekend in a long time me and DP could do something together just us....BUT ive been in bed all day. I went for tea at my friends house last night ( my 4 closest friends and I meet every few weeks, have a nice night in and a catch up) I had to come home....

I hate this controlling monster

2005. Sophia Mirza had severe ME. Her doctors thought it was a mental illness.
      She was sectioned. She got worse. She died aged 32.

2006. Lynn Gilderdale had severe ME. The hospital said she was pretending to be ill. She died aged 31.

2007. Two Norwegian oncologists find that .

2008. Karina Hansen is 24. She has severe ME. She has been sectioned. Her parents have not been allowed to see her for 3 months.

That's horrific Kate :(

Hope you can rest Belle.

My "what hurts today" list:

Both feet
Both ankles
Left knee
Both hips
Both wrists
Right elbow
Jaw

All stiff and swollen and not responding to the codeine being thrown down my neck. Tramadol in 30 mins and then bed, yay! Although not sure why I'm craving my bed as I've spent the entire weekend in various pairs of PJs. I haven't stepped outside the house since I got home from work at 5pm on Friday. Another fun-filled weekend at chez crashdoll.

I think being on my period is making me extra flarey and extra miserable. I'm trialling wheat-free too and although it's helping my IBS, I'm craving pasta and bread.