Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

High heels... Sigh... :(

I have a gorgeous pair of tan platform wedge ankle boots. All I can do is admire them through the see through box. And I love them.

Hmm, have spotted online that there is a link between hypermobility (which my rheum suggested I may have too) and hernias. I had an inguinal hernia as a baby, and now a rectocele as an adult!

Anyone else got the two together?

Oh god high heels! How I miss them! I insisted on wearing beautiful red 6 inch Kurt Geiger heels on my wedding day, I managed to walk down the "aisle" and pose for photos then had to give up. Now they sit in a box taunting me.

Where is Fuzz??

belleshelle I'm not sure, have you seen fuzz on this thread, or have we lost him/her since the latest thread reincarnation? It is often so hard to manage to get to MN with pain and illness for some, so can understand if some people don't visit often, but a shame to lose a regular if they haven't spotted the thread!
( I wish we could opt for notification emails for that kind of thing).

I've seen fuzz on another forum and she posted a couple of weeks ago on this thread.

Afternoon all, how are you all?

As predicted, today I am utterly shafted, despite the nice weather. I borrowed a few days worth of spoons to have days out, and now I'm paying for it. Dh had to dress me and brush my hair. I hate feeling like this. I'm so vulnerable and useless. This isn't what dh signed up for. He married an ambitious workaholic who's arrival would start every night out. I was the one with all the fire and energy, now I can't even brush my own hair.

Sorry, having a small pity party. Will stop wallowing in a bit.

Sorry, didn't mean to kill the thread

I think you just summed up how we all feel xx

Agree with gallifrey Hard to think of the times before

Yep, pity party here too, "busy" day yesterday

Thank you, I have to stop comparing myself to the old lissie.

Beyond, sorry you are having a crappy day too.

Went back to sleep, just woke up, feeling marginally better now :)

My mum has the boys and I was hoping to get some cleaning done. Not even dressed though!

Also stuck in self pity. Maybe it's the weather

Feeling bad too. Meant to get cleaning done today, but barely managing cooking. Decided to risk it and rest instead I get ill if the house is dusty, which can put me out 2-3 weeks because really need to tons at work next week given how poorly I did last. Almost in tears before dinner -- just want food! But can't afford to order out or get ready meals for everything, so have to cook.

Hi Korma sorry to hear you are feeling so rough. I am new to this thread but wanted to reassure you regarding the methotrexate. I have been recently diagnosed with RA and have taking methotrexate plus a cocktail of other drugs for about 4 weeks now. Like you I was really worried about the side effects, but a month into the treatment I've had none at all. I've never had to take more than a paracetamol in my life so all the medication was a bit of a shock. I have 3 young children so I have to take it so my joints won't be damaged any more. Take it easy while you're feeling so unwell, hope things are better soon.

korma, I know a few people on Methotrexate and most have had a good response to it, and only one (that I know of) has stopped.

Lissie; I constantly compare me now to me then, and try to live life as the old me would. It never works

Arrrgh have just lost half of a quite long post

anyhoo, the abridged version is I now take days as I find them. If I wake up feeling good, we do things. If I wake up feeling bleargh, like today, I mooch around the house taking it easy. I have embraced my inner slob (hard, as I used to to be so regimented with housework) and learnt to let it go rather than kill myself trying to be immaculate.

I often feel quite embarrassed by the state of my house (especially where my MIL and her beautifully clean and tidy house is concerned) but am learning to accept that the friends who care about me care about me and not my house.

Finished today with probably a few spoons spare for tomorow. Always a bonus

As an aside, I developed a ganglion cyst on my wrist about four years ago, just below the heel of my hand. It has bothered me constantly. I used to play with it subconsciously, like a worry bead. After my latest depo it has dsappeared overnight Have since read that ganglions could be due to the inflammation realted to lupus and has disappeared because my disease in under control thanks to the last depo.

Anyone else have any experience?

Korma, I have literally yesterday started sulfasalazine, so in the same "place" as you. Apparently its going to be 12 weeks before I notice a difference though, so Rheum nurse sent a prescription over to my GP for a cortisone jab to tide me over.

My house is a state. As I posted on the other thread, the problem is, I was quite lazy before having DCs and have only been ill since having them, so people just think I'm being lazy now too. And as I said there, it mays me feel like the boy who cried wolf!

MrsStarWars, I also very rarely used to take so much as a paracetamol for a headache, now I'm on up to 12 tablets most days!! I think I actually rattle when I walk!

Lackadaisical I had a ganglion on my hand for months, (it was a real nuisance as it was just where my hand joined my wrist and affected movement) and in the end was scheduled for surgery to remove it. It disappeared virtually overnight the week before. When I rang to cancel they said they commonly disappeared on their own. It was before I got properly ill though so not quite the same.
Not doing too badly here. I am seeing a new chiropractor who has a theory that nerve compression in the back (mine is all over the place) causes disfunction in even greater measure than pain, depending on which part of each spinal nerve is compressed. So my weak 'drunk' legs, tachycardia, etc etc are back related, rather than caused by ME. I will see how Ifit into this theory. I have had back pain since my early 20s but have stayed away from surgeons for as long as possible. I am lucky in that manipulation has usually got me out of the worst pain each time. I feel for those who cannot do this. Afriend of mine with a prolapsed disc ( after no back trouble in the past) and private medical insurance went straight to surgery and is doing very well.
My house is very neglected too. I am in bed now listening out for ds as he makes it even messier! He is watching a DVD.
Hope those who are struggling have a better day.

I've been on methotrexate for 3 years. I've tolerated it really well thanks to taking folic acid 5mg every day (except MTX day which is a Friday for me). I take it at night which seems to eradicate any nausea I felt when I was taking it in the morning. The following day, I am always more tired than usual but I just plan a quiet day.

Could just be coincidence that it's gone then!

How is everyone this morning? I had a very slow start to the day as I was up waaaay too late last night. Thankfully the kids are at an age they can amuse (and feed) themselves in the morning!

Having a shit morning. I've just lost it with DH and the DCs. House is a wreck. Nobody is dressed. And having DH tell me that they're 'only responding to how you feel' just doesn't help. I'm sure it's true but it does not help.