Feeling lost!

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Feeling lost!

Postby debstertigger » Tue Sep 17, 2013 1:12 pm

I seem to be gradually losing bits of me that made ME- Debbie!

I thought that, after over 13 years of pain,every type of investigation and medication,I would be relieved to get a diagnosis of fibromyalgia!

But no- I just feel lost! I have read around fibromyalgia, I am on amitryptolene(100mg) and duoxeltine(60 mg) which have helped with sleep and the pain up to now. I also have acupuncture in my back which again helps. So why don't I feel relieved or grateful for my lot?
I have lost my job of 18 years being a teacher, due to the numerous sick leave that I have had to take. Lots of these were classed as depression or stress as "medically and surgically, there was nothing wrong with me!"

Therefore management at work became less accommodating and made life miserable towards the end. I eventually resigned in May as I had no support at all and was just in so much pain and shattered that I just shut Down. I spent the time away from work, concentrating on listening to my body, addressing my sleep hygiene,my partner and I went on holiday to warmer climate and everything seemed to be looking on the brighter side.

Had applied to a teaching agency to work one or 2 days as supply teacher, which all went well until they received my references from my ex head. They have said his reference is not acceptable for me to join them- I am so cross and upset that I let him treat me badly whilst at work but he is continuing after I have left. I have no choice in the matter as I have been at the school for seven years and he is my only reference of recent employment! If only I had been stronger to demand my actual rights while I was there!
So why am I feeling lost?
1 I am no longer Deb Mum of William and Fred who can keep up with all of their activities.
2 I am no longer Deb who is centre of friendship groups, always got ear And shoulder for anybody.
3 iI am no longer Deb the good/outstanding teacher
4 I am no longer Deb partner of someone who does love me so much, but listen to him say "what's happened to my Deb?"
How do I answer? When I don't know?

I always could see light at the end of the tunnel for any problem but at mo I.m just in the dark!
Sorry guys- just needed to get it off my chest- then can put the smile back on for when they all get home!
Last edited by FluppyPuffy on Tue Sep 17, 2013 7:58 pm, edited 1 time in total.
Reason: Madeparagraphs clearer for easier reading.
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Re: Feeling lost!

Postby rchlearley » Tue Sep 17, 2013 1:29 pm

I have just sat and cried at what you wrote. One because I feel for you and two because its exactly how I feel. Im not me anymore and I don't like it. :(
People who don't have fibro don't understand. They can't see anything physical so they think you are putting it on. Your previous employer should not have written a bad reference. I was always told this was illegal tbh.
Im sending you a big hug and please don't let it get to you. Your health and family come first honey
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Re: Feeling lost!

Postby derekh » Tue Sep 17, 2013 1:37 pm

hello deb
its so hard for us this fibro attacks all areas of our lives ive had it for 45 years ive had my ups and downs havent worked for years because of it .i no longer feel like myself anymore just like a shell nothing inside but like you i put on a smile for everyone .no one understands this illness unless they have it .hope things get better for you soon
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Re: Feeling lost!

Postby debstertigger » Tue Sep 17, 2013 1:46 pm

Thanks rchlearly,
Was not meant to make you cry! But I understand totally what you mean and that exact reaction.
I am awaiting a copy of the reference as the agency are sending it to me, they were unhappy with it. I think it's not so much a bad reference but very lacking in anything of substance!
Just it's all at the wrong time, especially with a change in weather- the cold and damp is not helping!
Gentle hugs back and as my best frien and I say kbi- keep buggering in! We'll get there in the end!
I feel guilty for moaning as there are people whos lives are far worse and would prob be glad to swap for the life I have now.
Kbi

Deb xx
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Re: Feeling lost!

Postby Iceskatemum » Tue Sep 17, 2013 2:59 pm

Never apologise Debs this illness robs many of us of the person we were pre FM & we find ourselves in a similar situation to yourself.
Like you over the years I have had many illness and bouts of depression until this last period of illhealth caused my employer to review my services. I had given them over 25 years since leaving full time education and thought I was protected by thier long term sickness policy into having a written warning this time and then I would ride it out back at work for another while until I could do nothing else but come off again. However in the policy they have always had the ability to go straight to a review of sick record with the likelyhood of dismissal and in all fairness mine wasn't exactly a clean sheet. If I was an employer I don't think I would have wanted me onboard.

I was lucky in that I managed to get put forward & accepted for ill health retirement so at least I have my pension to fall back on, it take effect at the end of this month even though I haven't actually been in work since the middle of last year. With my dismissal looming I am all over the place mood wise at the moment. I don't know how to define myself when asked what do I do , I have no pigeon hole to put myself in . I can say I'm at home but then I get the guilt about what I can't do around the house and the fact my OH then needs to do it when he comes home from his work . I try and have dinner ready in the evening but sometimes not even this is possible.
I fail as a mother as I can't do things for my children as I am unreliable and may need to back out at the last minute. I have a very limited social circle as most have got fed up with my topic of conversation ( its very difficult to get excited about 4 walls and daytime TV) but like derekh , rchlearly & yourself I put on my face and try and behave normally for while I am dying on the inside .

Hang in there ,even if it is by ever shorter fingernails , there must be some sort of sunny days ahead , maybe there will be a breakthrough on how to treat us or even docs may acknowledge that our pain etc exists and its "not all in our heads" as so many do .

Lets think of the positive things that have happened today :-

I found a letter I was looking for so I can now respond to the companies enquiry :-)

Take care , chins up
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Re: Feeling lost!

Postby LouLou » Wed Sep 18, 2013 10:44 am

Hi Debs

I had to stop reading your post a few times because of the tears. In a bit of an emotional place myself and reading what you had written was like you had read my mind and posted it on here for me lol.

I'm 30, been with my wonderful OH for 8 years now so he knew me before FM. He knew the fun loving, able to go out and socialise, go for dinners, double dates with my sister and her OH, was lively, bubbly and earning a very decent wage working in Finance version of me. I loved my career and loved new challenges, doing training and expanding my role.

FM hit about 3 years ago and I feel like I'm a shadow of my former self. I'm only 30 but feel 80 most days, I had to cut my hours drastically at work and my boss, bless him, really looks out for me but due to the nature of FM won't let me do too much which on the one hand frustrates me as I want to progress in my career but then I'll have a bad fibro day where not only my body packs in on me but my brain and I can't even answer the most simple of questions let alone work on a spreadsheet with the company accounts on!

I got married just over a month ago and my hubby is the most amazing man to me, I don't deserve him. Because I had to drop hours we got into some debt so now he is having to work 6 days a week just so we can get by and it hurts me knowing it's because of me. He never moans about it and he loves his job which helps but I feel responsible. He deserve someone who was like how I used to be.

I do try so hard to push through a lot of the time and I try not to show how much I struggle but it is hard and some days you just feel like from the second you wake up you are fighting a battle.

I try and still do things socially and make the effort but I have noticed a drastic change in me. I was looking at photos the other day from way back when I first met my hubs and compared to pics taken recently the look in my eyes says it all. As I said most of the time I'm a very positive person pushing through but I have moments like this and like you are feeling Debs where I just feel so "lost" is the best word I can think of lol.

I also think the weather has a major affect on us and I have noticed a drastic return of my pain and fatigue this week, as it's gone very cold and damp where I live. Winter is always hard on us FMers, so stay warm, keep smiling and remember you are not alone Debs. And be proud of the fact you are still pushing through, still trying to do things despite the pain and fatigue and I think a lot of us don't give ourselves the credit we truly deserve just for getting through a single day having this awful illness.

Love and gentle hugs to all
xxx
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Re: Feeling lost!

Postby whoami » Wed Sep 18, 2013 1:41 pm

Deb,....you owe no apologies. You do not have to justify the way you feel. You owe no explanation.

Deb, I certainly can hear your frustration and feel your pain through your words. I can relate to your pain and depression. I will not say I know how you feel, I don't, Your feelings are yours, they reflect on you. Our journeys may be heading to the same destination but your path will be uniquely yours.
Deb, I don't know how your rights are protected legally from what your former employer has presented as a referral. Where I am, no employer can give a bad reference or discuss why you left your job. They cannot comment on your medical issues. They can answer the questions that may be asked by possible new employers in such a way to satisfy. For instance...they could say they would not rehire you for the position. No details given. This man sounds like a person with his own issues. Deb if you feel like working still then you keep applying. Find out if there is any action you can take against your former employer.

Deb, you still are a mother and a wife. You still are a friend and a teacher. You will find it hard to adjust your life but it can be done. Remember, you are Deb, not fibromyalgia. Fibromyalgia does not define who you are.
I can read in your post that you are a strong woman. You are just, like you say, in a dark place right now. That's ok, we all visit that place occasionally. You are just visiting.

Deb, there are a lot of understanding, caring and loving people here that can relate. They will hold your hand and walk beside you. They will give you a gentle tug when you step into a dark hole. Remember, you need to reach out and take that hand when needed.

Deb, after 25 years and many difficulties I try to stay positive but occasionally need someone to take my hand. I hope you will be one of the many that will hold out your hand and share your strength.

Take care and I hope you feel better soon, Lorraine
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Feeling lost!

Postby debstertigger » Wed Sep 18, 2013 4:17 pm

Thank you every one of you who have replied, I really appreciate all your kind and honest words. You are all exactly right in what you say and I had just come off the rails when I penned my post! It's amazing what a good offload does! I even wrote to myself this morning to remind myself of what I can do and the choices I do have in a kind of this is what happens but this is what you could do scenario. If it's written down it's out of my head but I haven't had to whine out loud!
Talk bout turn around! I wrote out all the good things I have in y life and all the things that I can still do easily! And of course they still all outweigh the can't do bits! I just needed to remind myself as I got my head out of the dark hole!!
Still painful this morning but did manage to wash my hair ( which always makes me feel better) after 3 days of not being able to touch anywhere on my head let alone wash my hair!!
Concerted effort to dry my hair and put some mascara on made a world of difference.
For out to post my sister's bday present and then spent a couple of hours with a good friend stoning plums from her plum tree and making crumble and researching other plum delights! Little things that have their own demands but accomplished and enjoyable. To top off the positive- I have had another teaching agency contact me after receiving my cv, who are happy to accept references from a teaching colleague and a personal reference, after I explained my present situation.
So thank you everybody for grabbing hold of me out of that dark hole to drag me back up to the surface! I really hope that I can return the favour to you all at some point. I am always here just at the end of a message no matter what! Promise will try harder not to make you cry with my notes!! Was not the intention!! Cry with laughter I don't mind!
Gentle hugs, with a good splurge of my good fortune,to you all.
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Re: Feeling lost!

Postby Iceskatemum » Wed Sep 18, 2013 9:28 pm

So glad you are feeling better today Deb, as Whomi says we can all get in a dark place and temp forget who we are and what we can do but then like you say we need to climb outta the hole and relish the little things in our life that bring a bit of laughter adn a smile.

Hope you enjoyed the plum crumble sounds wonderful, jam is always a good way to get rid of excess plums and its not as hard as it looks, it is always a lovely little gift to give to friends .
Fingers crossed for the job :fingerscrossed:
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Re: Feeling lost!

Postby LouLou » Thu Sep 19, 2013 9:55 am

Debs

To mirror what ISM said I too am so glad you are making your way out that dark hole. It can suck us in from time to time, over the last few years it's done it to me a fair few times, you just have to find a way to climb out, dust off and carry on.

After reading your second post I too started to think about the positives in my life, and though the pain is really bad at times and restricts me I am still able to do certain things and achieve certain goals - sometimes a bit slower than others but I'll get there in the end.

Take care and I'm off to make some toast with jam lol you've given me a craving now lol.

xx
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Re: Feeling lost!

Postby Iceskatemum » Thu Sep 19, 2013 10:38 am

Not sure if there is already a thread or not but given we have now thrashed out the fact that we need to relish the simple things in life and try and get rid of the black holes & guilt we can easily fall into I wonder should we start to share example of little things we have done in our daily life that have given us joy and shown us we are still part of the human race !


So here goes .....litlle things in life that shows us were great :_

Got up before 10 am to start the process of getting myself ready to meet a friend for lunch :lol:

Anybody anything else?
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Re: Feeling lost!

Postby FluppyPuffy » Thu Sep 19, 2013 11:00 am

Start a new topic off about it in Positive and Fun ISM :mrgreen:

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