Advice Please.

[xxstayceexx]

Hi all, i am currently awaiting my appointment at the hospital for the diagnosis / treatment plan of CFS/ME and my doctor also thinks i have combined Fibromialgia.

I have been up and down so much recently and i am just wanting some advice really from people who are suffering too. I was put on antidepressants Oct 2014 (which i have recently upped my dose) to help me come to terms a little bit more and just generally help me cope with daily life. My depression is now a lot better controlled since upping my dose and i now feel i am able to actually ask for help and deal with this illness a lot better.

I am experiencing up and down days at the minute which is so annoying as i have to plan each day depending on how i feel when i get up in a morning. Im finding it very hard to explain to people as i dont describe myself in pain as such its more like a dull ache all over my body most of the time. The amount of times i say to people "im ok thanks" just to stop them thinking im moaning all the time is unreal. My faimly and partner luckily are starting to understand and do support me i just find it hard to constantly tell people im suffering. This week i have experienced pain but this is from having family over at the weekend and just doing too much but it does seem to have eased again to strong aching. Im struggling on coming to terms with having to live life like this. I have never been "fit" as such but have never found simple day to day tasks sucj a chore as i do now. I dont want to drive anymore as its just a constant reminder of the body aches and struggles i have. I worry about walking about and things. Me and my partner went food shopping at the weekend and half way round i found myself getting upset and agitated as i just couldnt do it from my aching legs and back. I ended up nearly in tears and we ended up cutting our shopping short so i could go home.

I am aged 24 and feel like i am aging everyday. Just wanting someone to share my worries with really and also someone to hopefully give me a bit of positivity about how they cope. Im really scared about actually having the diagnosis made as i know there is no cure as such. How and what has helped for others please?

Sorry for the long winded post.

Wishing you all good health.

[MrsSowester]

Hi there,

Just wanted to say don't be scared of diagnosis, it's actually a huge relief by the time you get it! Although there's no treatment yet research is getting closer and there is hope on the horizon.

As far as coping goes my advice is:

* Don't waste your energy on shopping - do it on line! If you must go to shops build in rest times where you can sit quietly with your eyes closed. I do a little shopping when I'm feeling perky, but just do the bits that are important to me then let my husband do the rest while I sit in the car.

*Enquire about getting a blue parking badge, these are a godsend.

*Accept how you feel physically - don't be a martyr, you'll just get more poorly. If you feel like rubbish, just rest up and binge watch a great series on TV or whatever. Or join the audiobook site online if your eyes get tired watching TV.

*Driving is exhausting, don't bother unless you have to.

*Worry is exhausting, distract yourself!

*Accept all the practical help offered, don't let pride get in the way if someone is kind enough to do a bit of cleaning or suchlike for you.

*Whatever you are doing - stop when you feel your warning symptoms kicking in (like you did in the super market).

*Set yourself a routine that works for you and stick to it - wake up at the same time every single day, practice sleep hygiene principles, eat at regular times, rest, rest and rest.

Staying happy is important:

*Surround yourself with things that make you happy; beautiful bedding, flowers, cushions, gnomes, my little ponies, disco glitter balls - whatever brings you happiness!

*Make a happy music playlist for when you need to feel a bit of joy. I love a bit of Moloko, Sing it Back & The Time is Now are really uplifting as is Bjork Hyperballad - but that's just me

*Don't give a **** about what other people think! If they walked a mile in your shoes they'd get it, just be happy for them that they don't have to know.

*When people suggest you're imagining being ill (this will happen) understand that it is easier for them to think that way than accept it's possible to be struck ill with a disease as flipping mysterious as this! If you're feeling cocky tell them people said that about MS once.

You can reach a place of peace and acceptance, I promise.

I believe there will be a treatment and we just have to hang on in there and try not to get any worse while we wait for drug trials and research to get there. The momentum is growing across the rest of the world so it doesn't mean we're slow in the UK.

Sorry this is such a long post but hope it is some help - it's what works for me (apart from the gnomes and my little ponies, I'm a dolls house person in reality, but I will admit to loving a glitterball!)

Love and best wishes X x x

[MrsSowester in reply to MrsSowester]

Sorry - that end bit should have read:

The momentum is growing across the rest of the world so it doesn't MATTER we're slow in the UK.

[Fio1331 in reply to MrsSowester]

I've just come across this fabulous response, which is timely for me, also on the brink of diagnosis, and quite down. I think this needs to be made into a poster / leaflet / T-shirt Seriously, I'll probably print it out. Thank you. x

[nedd]

I can't add anything.

But just throwing you a handful of star dust to light a dark corner.

Here catch.

[nedd]

I just remember someone posted this on the fibro community.

I loved it so am bouncing it your way.

Read it believe it. X

Take an index finger

point it at yourself

say out loud

"You Are Special"

"However you are is ok"

"Whatever happens you are a survivor"

You have pain, IT doesn't have you!"

"Every day is an achievement."

"I am proud of you"

and..... relax

[xxstayceexx in reply to nedd]

Thank you both very much

[Starbys]

Hi xxstaceexx

Sorry to hear u have been struggling.

All the feelings you've been experiencing are normal reactions to finding out you have a chronic illness.

It's a lot to get ur head around and u won't get used to it overnight. But you will get used to it and things will not always be this hard.

Whilst there isn't a cure or treatment , with a technique called pacing many people are able to manage their energy and symptom levels so that you are not in a 'boom and bust' where ur up and down all the time- instead you try to find a level of activity you can manage even on bad days and stick to that every day.

This can take some trial and error, patience and perseverance, but you will get there.

Then as your body gets the rest it needs over time you may well improve a bit and then eventually down the line could be able to increase ur activity levels a bit more.

But it's a case of baby steps.

You have to rest a lot at first and do a lot less activity than you used to.

But with time and perseverance it helps the body heal and then many people are able to go on to improve to some extent so you are able to do a bit more.

Rather than try to explain it more I suggest you look at this website:

Butyoudontlooksick.com

And also

Tymestrust.org are are charity supporting people aged 25 and under with ME.

They have some very good info on their website which you will probably find helpful.

Also, The ME Association produce a range of fact sheets about ME which help you to learn about different aspects of managing the illness and symptoms etc.

They are very good for more newly diagnosed people and I think you would find some of them helpful.

Action for ME in my personal opinion is not as good a charity, but that is my opinion.

However they do have a good booklet on 'pacing' which you can order from their website.

It explains it and how it helps and how to do it.

The website addresses:

MEAssociation.org.uk

Actionforme.org.uk

good luck and please do feel free to ask anything you like here or seek moral support and understanding any time you want and need!

I know it feels like a life sentence having this diagnosis but once your body has had chance for lots of rest to help heal, and if you can master the art of pacing, and if you have symptoms like nausea, pain you get medicines to help control those symptoms, then things should hopefully get easier. It's a case of learning to accept and live with your limitations which is hard but necessary , and in the long run can result in some improvement for many people.

There are people with ME who still work and have social lives and careers albeit part time or adapted to suit their needs and with plenty of extra rests in between.

Not everyone can.

But there is no reason to think you can't live s relatively nornal life , but it takes time and patience as if you rush into doing too much it will cause a deterioration.

Take it slow and steady, and bide your time but know things won't always be as hard as they feel now.

Take care and do let us know how ur getting on or if anything we can help with any time, whether it's daily, weekly or whenever you need you are welcome to post here for support or advice.

Take care,

Starbys

[xxstayceexx]

Thank you very much Starbys. I have actually had my Diagnosis confirmed by the hospital yesterday. I have Fibromialgia and CFS/ME. Im sure i will be chatting a lot on here as you guys are the only people who will truely understand and know what im feeling.