All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy


Postby mary251 » Tue Sep 09, 2014 5:52 pm

At the moment, things are really beginning to get to me. My fibro is flitting between bad and unbearable, and on the days where I'm actually able to move and do little bits, I find that my strength is sapped by depression. I've just spent an hour crying because I feel like I have no control over anything in my life.

I applied for PIP back in December, and I still haven't heard anything from ATOS. I gave up my job in April because I simply wasn't coping, physically or mentally, and so money is very very tight right now. I tried applying for ESA, but as my partner works, and I was receiving apprentice wages (£2.65) during the 2012/2013 tax year (the benefits people work one year behind when it comes to contribution-based benefits), I'm unable to receive ESA as my contribution wasn't high enough. Financially, we're really struggling, and I feel completely responsible for it.

I'm doing my best to get out every day; I do the school run and try to chat to other parents, I go for a short walk down to the shop most days and even though it's only a couple of minutes walk at a normal pace, it's all I can manage on a good day, and way more than I can manage on a bad day, but I try it anyway just to get out for a bit. I wanted to get a dog, which would help get me out a bit more, and even socialize with other people (puppy classes, other dog walkers, etc.) but that idea has been discouraged by my in laws, and, as they own one third of our house, I'm reluctant to get into any arguments with them over it; I simply don't have the energy. It seemed like such a little thing to give me back some feeling of normality.

Social Services were supposed to come around and fit some rails in the bathroom, and stuff like that, but after the initial phone call a month ago, I have heard nothing more from them. I went to an appointment that I had booked with my new GP (my previous one had been about as much help as a chocolate fireguard), and discovered that, not only was I not registered, but the appointments I had booked when I had registered hadn't been put into their computer system. I'm now seeing her next week instead.

I'm trying my best to be light-hearted and upbeat, but the general, day-to-day issues of fibromyalgia that we all know so well and loathe so much are really beginning to get me down. It feels that I have so little control over my body; pain, itches, muscle twitches and spasms, too cold or too hot, dry eyes and mouth, dropping things, and so on. I just want to be able to feel that I have some control my life, but it feels like almost every aspect of my life is currently in the hands of someone else; ATOS with my finances, Social Services for the aids and adaptations to give me a little independence, my GP for some support and help. Everything is so overwhelming at the moment, and I feel helpless to do anything about it.
Sometimes, there is simply not enough chocolate in the world...
UKFM Member
Posts: 26
Joined: Thu Oct 10, 2013 12:53 pm

Re: Depressed

Postby juliekp » Tue Sep 09, 2014 6:18 pm sounds as if u r having an awful time of it at the moment. I also am struggling with the fibro depression etc. It is good to write on here and read the responses. It makes u realise u r not alone. Please do not give in. Keep fighting even when u feel its fruitless. Take care. Juliekp
UKFM Member
Posts: 27
Joined: Tue Aug 05, 2014 11:22 am

Re: Depressed

Postby Helhit » Tue Sep 09, 2014 6:26 pm

Hi this fibro is blooming awful isn't it.

I'm glad you're seeing your doc, as talking things through with them should help.

I'm just at the start of the claiming PIP process, but understand how frustrating the wait is, especially when your finances are strained. At least when you do get it, it's dated back to your original phone call.

Wrt the dog situation; it's a hard one. I have 2 dogs, one is 14 and just likes to sleep mainly now. My other dog is a Yorkshire Terrorist!!! She's nearly two and is an absolute joy. She loves walks, but also doesn't need to go too far. She will quite happily spend all sat on my lap. She loves being stroked and will collapse with her legs in the air at the slightest hint of a stroke. She has tremendous hearing and alerts you to anything going by, which could be annoying, but we find it funny, this tiny thing protecting the house.

That being said, there's a breed of dog for everyone. Maybe the in laws might be more willing to think about it if it's for their grandchildren.

Ps good on you for trying to get out every day. Just being outside can lift your spirits.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
UKFM Member
Posts: 160
Joined: Tue Apr 29, 2014 4:52 pm

Re: Depressed

Postby FluppyPuffy » Tue Sep 09, 2014 6:50 pm

I'm sorry to hear how things are for you at the moment Mary :grouphug: :grouphug: :grouphug: :grouphug: With the number of times over the years that I've found myself in a similar position, I do understand how things are pulling at you currently, and you'll probably find that quite a few more of us have been in similar positions, so you're not alone with this.

Wrt PIP, the system is in complete meltdown, with massive backlogs all the way thru the process. There are a number of topics across the boards with people finding themselves in long waits to hear about things. Have you contacted the office dealing with your claim to see if they can give you some idea of where you are along the way???

With hubby working, are you're also unable to claim Income~Related ESA??? If so, then it might be worth trying to see if there is a Benefits/Money Adviser in your area. As well as being able to go thru finances with you to see if there are any ways a little can be saved on your current outgoings, they may also be able to advise about other benefits you may be eligible to claim, such as tax credits etc.

You're doing the right thing in trying to keep yourself as active as you can. When your FibroMinion is behaving particularly unpleasantly towards you tho, easing back on what you do thru that time can help you find your way thru it, so try to show yourself a little extra love and kindness, it might also help push those concerns that may be whirling around about what you haven't been able to do during that time.

Don't give up completely on your dream of having a little furryend to keep you company. The situation with your out~laws owning part of the house is an added obstacle to overcome, but it is possible. What is hubby's view on the idea??? Is the rest of the house in yours and/or hubby's name{s}?? If so, and hubby is on side, with you having the majority share, ultimately the final decision should be down to you and him. Plus there are other furryends that could be considered in a compromise that can give you just as much unconditional :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: as a :dogrun1:

Altho things do seem rather bleak at the moment, if you can find it in yourself to take that rather :yikes: :yikes: :yikes: :yikes: step, there are quite often ways to find your way thru it to somewhere a little lighter and brighter :flowers: :flowers: :flowers: :flowers:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Depressed

Postby DonnaMorgan14 » Tue Sep 09, 2014 7:02 pm

since i was diagnosed with Fibro if it wasn't for my dogs i wouldn't go out, they make me go to the local park every day, which i will add was horrendous at first but as time went on it got better which is better in turn for you. speak to your in laws again, get your hubby on side and in the end they will see for the better and you will reap the benefits. i have always had dogs, at one time i did have 12 but now i am down to 6, but only two really need a lot of exercise (Border Collies aged 2 & 3 yrs) as the others are old (10 yrs plus, 3 maltese and 1 pom x chi) and are quite happy to sleep their days away. with the depression i have had with fibro if it wasn't for my dogs i know i wouldn't be here now. as i always say, "you may not always get the dog you want, but you will always get the dog you NEED" take care and i wish you luck xx
UKFM Member
Posts: 15
Joined: Sat Mar 15, 2014 10:00 pm

Re: Depressed

Postby Tel1 » Tue Sep 09, 2014 7:58 pm

Hi there

You sound like how I have been..... terrible Fibro isn't it... :yikes: :yikes:
*however* regarding your PIP assessment, is this a first time application? or have you had DLA in the past?
Just remember this.. that ATOS does NOT make the decision... they send a recommendation and when the
DWP get that, they act on that... However if you disagree with that outcome, you can appeal and ask to see
a copy of the ATOS report made from one of their so called health care consultants:)) Regarding social services
ask for an OT assessment and get them round to conduct a report on you and your needs, and then send that
to the DWP but not ATOS afterwards.... it is down to the DWP to make THE decision based on everything you
send them, your own doctors report, social services OT report and all that sort of thing will go in your favour .
If you have applied for PIP for the first time it can take forever for them to get back to you... but IF you get
called in for an assessment.. just make SURE that you take everything you have in writing to them, but do not
give it to them.... keep whatever you have... and then IF IF IF you get turned down, then just send them everything
you have and additional letter from you GP hospital consultant... the more you have the better your case will be.
Hope ALL goes well for you... let me know. :-)
UKFM Member
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Re: Depressed

Postby TracyJ72 » Tue Sep 09, 2014 8:16 pm

I too have this horrible Fibro :-( I have 3 dogs and apart from a little exercise & social outing they are great when you're feeling down. I'd recommend getting a little friend. I have a 3 year old Bichon Frise x Poodle cross, a 2 year old Shih Tzu and a 15 month old Pug x Chihuahua cross. None of them need a huge amount of walking but all of them love cuddles. My eldest dog even licks my tears away when I cry.

I wouldn't recommend one like my youngest as he is a terror & fast! My calmest & easiest dog is my Shih Tzu.

As for someone owning a third of your house, that means you own two thirds!! Go ahead and get a pup.

As for your ESA claim that sounds like contribution ESA there's also another version called income related ESA. Look into that one xxx
"You know you are sick when you have to come up with simplified versions of your illness to tell people".
User avatar
UKFM Newbie
Posts: 9
Joined: Sun Aug 24, 2014 1:30 pm

Re: Depressed

Postby Queenie_70 » Tue Sep 09, 2014 9:47 pm

The best advise I have ever had, as I tend to get extremely depressed, is to organize my thoughts. Not just sit and dwell on all of it as it is, it truly is, overwhelming, but to take it all one issue at a time.

List out what your priority is and work on that one thing only. If it is your finances (as it is with so many of us), look into, housing benefits ( you can get help even with a mortgage), council tax relief, clothing grants, disability rights and grants, anything and everything that you can think of that you can Google or call to get information about.

It is amazing how this one act can clear your head a little as you have made a positive move forward even though it is only on one of your problems.

When you think you have done what you can regarding your finances, move onto the next priority on your list....the adaptions, or even the dog, and start over again. Find what you can that will solve or point you in the right direction for your new priority. (It sounds silly as all have so much going through our heads that it feels like we are going to explode, but this has helped me time and time again).

When you are focused on what-ever it is you chose to focus on, make sure you don't let the other issues push forward, and be pushy. Don't send one email, send a dozen, don't make one call, call back again and again.

Best of luck with it all no matter how you choose to deal with it all. We are here always. Know we support your rants, raves, depression, and highs, as much as anyone else on this site.

(((gentle hugs)))
"Life is not measured by the breaths we take, but by the moments that take our breath away."
User avatar
UKFM Member
Posts: 363
Joined: Sat Apr 19, 2014 10:23 pm
Location: Consett, Co. Durham

Re: Depressed

Postby kayhealey » Wed Sep 10, 2014 7:35 am

Dear All,

My dog is what keeps me going half the time (the other half I'm not going at all!). They are just the best companions in the world. Mine stays with me,esp. when I'm so bad I have to spend the day in bed. He scoots up as close to the side of the bed as he can, so he's almost under the bed and he will stay there as long as I do. What a lovely Labrador Retriever I have! Thank goodness my husband does most of the walking with him, because Labs need the exercise.

Just wanted to say mainly that it is about bed-time for me and I will be praying for you all as I (hopefully) drift off to a lovely sleep--haha what a dreamer! The haha is not for the praying. That I will do and I believe God hears our prayers, for ourselves and others.

Hope for better days, and feeling better and good news and more spoons!
UKFM Member
Posts: 25
Joined: Sun Aug 24, 2014 5:29 am

Re: Depressed

Postby nogginpodge » Wed Sep 10, 2014 1:51 pm

Well, in the light of so much sound, caring advice I wonder if there is anything I can add.

My heart goes out to you, you seem to be so much at the mercy of other people and waiting for them to move on your behalf; that must be SO frustrating!

First of all, you are NOT to blame for your illness - you didn't ask for it and you are coping with it very bravely and admirably.

Here is a link for a website that help people with PIP claims and anything to do with the DWP and Atos; they are excellent and all work for free. ... P-and-Atos

I'm sure they will give you the help, support and encouragement that you need with your claim.

Yes, get yourself a little doggie! Its the best thing I ever did. I've got a Jackhuahua (a Jack Russell/Chihuahua cross) and she's a wonderful comfort and companion to me. These little lapdogs are great, they don't need a lot of exercise and will happily snuggle up to you all day. I agree with the other comments that you own 2/3 of the house, and that if you get your husband on side and say its for the grandchildren ... hahahaha!

Social Services are always busy but if you keep calling them, they'll get sick of it and bump you to the top of their "to do" list. I know when you're depressed you feel you couldn't antagonise a fly but, honestly, just keep calling them every few days and firmly reminding them that you are still waiting for your bathroom rails.

Its inexcusable that your new GP surgery hadn't booked your appointments properly, but let's hope this new GP will be better than the old one; make sure you take a bit of time to sit and write a list of things you want to say to your doctor and things you want to ask her. I find brain fog a real problem in situations like this and absolutely rely on my notes! There's nothing worse than coming out of the surgery thinking, "Oh damn, I didn't tell her about ...."

I know if you can make progress with just one of these problems you will begin to feel better. I sincerely hope your ship will soon be sailing on calmer waters because you don't deserve all this.
UKFM Newbie
Posts: 8
Joined: Mon Sep 08, 2014 4:37 pm

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 3 guests