Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

I haven't building but I've heard some good things about The Lightning Process One Practice here I don't know if it's similar and I've not done it, but thought about it...some people say it works better on young people which knocks me out of the equation

Just read up on Gupta Amygdala Retraining program and it sounds good...feel skeptical though, but that's how I am I suppose.

I read up a little after your other post building. At first I was quite excited as it did seem to make sense, but now I've settled back to my usual scepticism! However I did opt for the 3 free downloads, as haven't ruled out saving for the DVDs. My trouble I think is that I do not accept that my CFS has a psychological cause. Yes to illness (pneumonitis - long stay in hospital) and physical stress (ds needed 24 hour care at the time) but not to worry (Ds was by then diagnosed and in a good sn school - goodness knows what would have happened if I had got ill 2 years earlier! However I have not ruled out using a psychological means to fool my brain to get things right. Theres mixed logic for you.

Thank you for all the positive comments on my walking stick. Using a walking aid is really not a road I wanted to limp walk down but after a stern talking to from my physio, I know I have to find a way to accept it.

The heat is making me such a grouch; my joints are swollen and I have a rash on my chest even though I lathered up with factor 50 regularly as well as sitting right in the shade FFS! Everyone else seems to love the weather, so I feel like a massive killjoy.

I suddenly feel very sad, my DH has just got back from doing a mountain marathon in the Lake District. He ran for 7 hours on saturday and 4 hours today. He was just telling me that there were loads of families there all doing the event together and there was a generation class with Mums/Dads running with their sons or daughters. He was saying he wanted to do that with our DD when she is a bit older (You have to be 14) It just hit me that I will never be able to share his hobby or do anything with him like that because it involves having to be able to walk and run.

Obviously I don't begrudge him his hobby obsession but it just makes me sad that he doesn't do something we can all enjoy and I feel a bit left out :(

Gallifrey I think the thing is to find a middle ground, although mountain marathons are such an endurance sport (especially adding the journey to the event) that I can't quite find any middle ground. I do understand the sadness. I used to walk and climb ( mountaineering) and DH still does and I really thought my mountain days were gone - a shame as I got ill just as ds was growing up enough to join us. Ok -I cannot do much but I can fit in with the gentler end of things. Some things are designed to allow me to join in or have a small part (even if it is only sitting at the half way point with the camera and picnic) and some I cannot join in at all with. Actually the fact that dh can take ds off and leave me to rest is quite helpful.

My cructhes and stick are lifesavers & stop me being housebound. When I am more well, I don't use them. I love those rare days when I walk like a normal person. Having aids doesn't mean you have to use them all the time and sometimes it is enough to know they are there.

I'm really not well. Despite the heat, I've had goosebumps & awful chills for days. I've not slept properly for ages. Mentally, I'm almost at rock bottom. Lots of suicidal thoughts & plans. I feel horrible. Poor DS is struggling & such a worry. He;s full of anger & defiance. Usually I smile & carry on as normal to prtect him from my struggles but I can't do that any more. I hate what this has done to him. I didn't want to get ill. I'vedone my best to carry on. No-one will help. No-one can help. And I'm wrieckjihng the lives of those around me. I can't live like this.

I'm trying to rehome the dog so I don't habve to worry about her but no-one wants her. I love her

Sorry for miserab;e post. I felt like I needed to write this down. I don't know what to do. GP, crisis pepople are pointless.

Crashdoll you definitely aren't alone in hating the heat! It's a nightmare.

Gallifrey I hate missing out on hobbies too. I was learning to run when I got ill and had planned on doing stuff like family Kung fu lessons etc now the DCs are old enough.

Grockle I'm sorry you feel so low. Can your sister take your dog? I don't think it's bad that you can't put a brave face on for DS. Kids can see through that anyway - better to be honest. Does he have good friends at school - could you ask one of their parents to have him round once a week or something just to give him a change of scene? You two do seem really close and I'm sure the cuddles do help.

I think I'll be going to work tomorrow evening even though I'm not sure I'm ready. I hate missing out and I feel like I want to check in with my friends IYSWIM. Needless to say I didn't go to my friends' house, in fact I didn't even wake up til 9! Have a major headache tonight post coital WTF is that about?! and can't sleep. Hmmph.

Grockle I wish there was something I could do to help. How are you today? xx

Grockle What breed is your dog? You could try a breed specific dog rescue? My heart goes out to you. I can't look after my dog as much as I would like but my mum is being a saint and looking after him for me, so I can empathise a bit. It sounds hard, just tough in general. for you xx We are here if you need to talk. Sometimes just getting it out and being heard and acknowledged helps.

Thank you all. I called in sick today because I felt dreadful this morning. My heart was racing again & I had chest pains so I went to the GP who did yet another ECG. Dr said the rhythm was ok so thinks I just have a fast pulse. I mentioned sleep, night/ day sweats & chills, suicidal thoughts (really good new ideas... feeling oddly pleased with myself for coming up with such a good plan, amazed that I've not thought of it before but then feeling very scared about it all ). He gave me some sleeping tablets & upped by Gabapentin.

As for the dog, I asked exP to take her for a bit til I am managing a little better but he said he won't can't. I don't want to get rid of her, I just need some help.

I think I am just finding feeling really ill, being a lone parent, working & doing all the cooking (well, opening packets ), laundry, driving, thinking etc and dealing with DS a bit overwhelming. But what can I do?

Sorry for being so pathetic & needy all the time. I always used to be such a 'together' person... smiley, organised, busy, happy. This is not me.

Crash, she's a border collie cross. I think the rescue I got her from would take her back but I desperately don't want to do that. I will bide my time for now or just drop her off at exP's.

I have discovered that I have health insurance through work that provides a 24/7 free telephone counselling service so I might try that. They also cover physio, accupuncture, chiropracter, aromatherapy so I'm going to look into that.

Hope everyone is managing in the heat. I love it but I know lots of people find it hard to cope with. Love & spoons to all.

Grockle - there are some charities who help older people/disabled people who cannot walk their dogs anymore. I wonder if they'd be able to offer any help?

I'd been in touch with my local group but they never got back to me. I can't think what they are called but it's like the cinnamon trust but for people with chronic illnesses.

One of my friends managed to get her dog fostered for a while...maybe an animal shelter might be able to help you look into that?

And I hope the council is able to provide some support for your DS.

Keep your chin up Grockle. x

I have a variety of mobility aids depending on how I'm doing - a stick, walking poles and a wheelchair for the bad days. It did take some getting used to but now I find if anything the stick gives others a heads up that I might not be too steady - save me from the indignity of being knocked to the floor in tesco!

Gallifrey I feel your pain about running. I used to run loads (ran for my uni) and I really feel it now I can't balance and have such fatigue. We also used to do a lot of walking. A few months ago I had a very vivid dream that I was on top of a mountain and when I woke up I was devastated. On the may bank holiday weekend we went to the highlands and dh organised us going up the funicular railway on Cairn Gorm, it was fabulous!

The DLA thing is crazy isn't it. I get hr mobility (so automatic blue badge) and MRC (mainly because I often have issues with dressing and washing). There's so much comes with it - we got membership of Edinburgh Zoo but didnt need to buy it for dh as he gets in as my carer. I've got a bus pass, disabled rail card, card for the cinema etc... I suppose that strictly we don't need all this, but I do claim it, I'm entitled to it.

Gearing up now for next hospital appointment - I'm in all day on Wednesday for my immunoglobulin drip and dreading it already (I'm phobic).

Grockle, I wonder if the gabapentin is making your mood worse. It had a really scary effect on DH when he was on it (and again when coming off it) - he was so angry and really depressed.

Ds gets DLA so I as his carer get reduced entrance fees for several local attractions which is useful since we often can't stay long - it used to be because ds could not cope/ behave for long, now it's usually me that needs to escape. The limitation now is being well enough to have the energy to get out at all.
Weegie hope your hospital stay goes well. Must be difficult being phobic and needing regular IVs. I don't suppose familiarity helps either.

Grockle I hope you get some luck soon. The counselling service your work insurance covers could be useful. I found just being told (by the CFS team) that I was not lazy when I was feeling totally demoralised and overwhelmed helped me to believe it. One small step forward. It helped me step back a little and slow down enough to get a little less ill. I wonder if the counselling service might, through their contacts have useful practical suggestions to help with your dog walking and other practical demands on your energy perhaps knowing the organisations who might help. Is there for instance a benevolence fund or charity to help teachers or professionals who have become ill or fallen on hard times? Perhaps your union has a fund? I know you are not asking for money, but money can buy services and that might be one small job less for you. My heart goes out to you. I wish I was closer to help but that really would be like the blind leading the blind (allergic to most dogs) at least it would make you laugh.

Ok so my scepticism is toning down re the Gupta program as I have listened to more of the utube downloads. Is anyone else trying the free downloads?

I have just reapplied for DLA and been turned down again, apparently I'm not disabled enough...

Grockle!!! im so sorry your feeling so shit, there is nothing worse than been at rock bottom..... ive been there got the t shirt., etc, as for the dog, if you did have to re home don't feel guilty, we once had a dog and when DS came along I just couldn't do the whole baby and dog thing, so weh ad her rehomed..i was mortified but it was the right thing for the dog, she got to be with someone who could walk her and give her the attention I couldn't (she too was a border collie!) Im on the sick again, I stopped taking amitriptyline 2 weeks ago, (im sick of being fat.i have lost 4 lbs too since then) but omfg the pain, I have been in not just the usual crappy pain but abdo pain, it turns out amitriptyline is used to control IBS, and me stopping it just made things a whole lot worse, so I was back to GP yesterday ive asked for a lower dose and lets see how I get on from here.

As for DLA I have been turned down twice and lost appeal, I too aren't disabled enough.

Grockle ring text or inbox me if you want to talk, xxxx

Weegiemum "I find if anything the stick gives others a heads up that I might not be too steady - save me from the indignity of being knocked to the floor in tesco!"

Part of the reason why I have grudgingly accepted the stick is due to a series of humiliating falls that have required assistance/attention from passers-by. Surely a stick is less embarrassing than being hauled up off the ground by a randomer?!

Crashdoll - I so get that!! My last fall (apart from the crappy slip after dd2 spilt juice on the laminate!) was in Sainsburys when a posh business type bloke. Knocked my shoulder and I fell. He didn't break stride, and for me, getting up involves crawling to a safe post I can use.

It's just so embarrassing - lying on the ground struggling at not much past 40!

Find it mad hat I'm eligible for MR care and HR mobility when plenty of you aren't. I do need it, but it's nuts that so many of you don't!!