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New here, disheartened and confused by this horrible condition

estellastar profile image
15 Replies

Hi guys

I have just joined your group. I am disheartened that I will ever get any degree of control over this condition. I feel life is leaving me behind. No longer able to work as a Registered Midwife, devastated.

Started Duloxetine a couple of weeks ago, but alarmed by all the scare stories. Just taken 30 mg Duloxetine and finding it hard to stay awake.

Have a PIP assessment in a couple of week and scared stiff. Also suffer from severe depression, anxiety, osteoporosis, five fractured vertebrae and two herniated discs. Also have heart condition. Feel like giving up. I used to be full of fun.

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estellastar
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15 Replies

Hello- you have come to the right place to "Offload" hun... we are all suffering long term here, ask any questions you want anything you don,t want to air on the Forum we have a system of private messaging incase you didn,t know.. Leaving Nursing is a real crisis for us, I retired this year age 61 with fibro/OA/ not quite into midwifery but in the theatres assisting with "the elective list" and gynae theatres. I hope you have an NHS pension they have been really good for me, anything you need to know about cutting down hours in your job, asking for "lighter duties" or retiring just ask away.. I,ve found aquatic therapy to be beneficial -hydrotherapy, maybe if the trust where you are has this facility ask your occ health to put you forward I.m sure you,ll benefit .. anything more ask away doesn,t matter how many times you message nobody is ignored here..

Titanaboa profile image
Titanaboa

Hello and welcome estellastar

I'm sorry you're feeling so down about your condition and struggling to cope .

It can be a hard fight at the best of times and feeling like your climbing a mountain every day.

I'm sorry you've lost the ability to work. I feel very lucky to still be employed and I can understand how you must feel even through it hasn't happened to me.

Don't be too worried about other people's horror stories as you may well be so different and what works for you works for you. You may be taking time to adjust like I did with Tramadol. Anymore issues then definitely discuss with doc as there will be other options for you.

It's hard to come to terms with things and the feeling of loss is similar to grief over the life you had versus the new one. You just try your very hardest to accept that your life is now different and don't get hung up on what you now cannot do and focus on the things you CAN DO. Try to find other activities to enjoy and that will cheer you up.

It will be a long road but you will eventually accept your new life as we all have. You will come through this stronger.and who said you will never have any form of control over your condition? Medication and your own mental strength will see you gain control. But be under no illusion control doesn't mean pain free , symptom free nor does it mean life back to its old ways .

Once you have come to terms with your life change you will feel more positive.would it be worth talking your emotions and struggle over with a gp?

Now listen to me. You'll never know how strong you can be until strength is your only option and now it is ! Don't fight your condition let it live along side you. Fighting wastes valuable energy that could be used more positively. Having said that you're a fighter staying above water and doing an excellent job. We all fall once in a while but the people on there will help you stay afloat as we have all been there. You're doing great. Keep that chin up however hard it is and look for the tiny positives in your life They will be there no matter how many dark corners they're hiding in.

Don't be hard on yourself if you need rest then rest. Sleep then sleep.comfort and support then ask and demand it.you're worth it. You deserve to be happy and feel supported. Do whatever it takes to take your mind of your condition but don't ignore it and push too hard.

As for your pip being nervous is normal and I will look for a recent post by a lovely member that us all about pip.

Good luck with it I hope you get awarded it.

Don't give up fellow warrior you're amazing and thank you for reaching out on this forum we will all help you as much as we can

Look after yourself. Stay here and ask for the support you want

Take care wishing you the best day, lots of hope and luck.

Ann-Marie xx

Titanaboa profile image
Titanaboa in reply to Titanaboa

Thank you frances1 for liking my reply

I hope you have a great day x

Titanaboa profile image
Titanaboa in reply to Titanaboa

Thank you stargirl47 for liking my reply

I'm so glad estellastar is getting so much support from all of you here

I hope you're well

Ann-Marie x

Titanaboa profile image
Titanaboa in reply to Titanaboa

Than you Trikki for liking my reply

I'm so glad estellastar is getting so much support from all of you here

I hope you're having a wonderful afternoon x

Titanaboa profile image
Titanaboa in reply to Titanaboa

Thank you once again Macberts for being kind enough for liking my reply

I'm so glad estellastar is getting so much support from all of you here

I hope you're enjoying your evening

Ann-Marie x

Welcome you are among friends we all support each other

stargirl47 profile image
stargirl47

Hello and a very warm welcome estellastar welcome to the gang we are all pretty much in the same boat , we all have fibro and like yourself we all usually have other conditions along with it , im sorry to hesr that you have had to give up your job, im one of the lucky ones who still manages to work so I cant help you with the pip assessment but there are many on here who will be more than happy to help with that im sure , we are here 24/7 so any time you have a question need a chat want to vent or need a shoulder to cry on or just need a laugh there is usually someone on line and willing to chat , as mostnof us suffer with sleep depravation there is always someone around no matter what time of the day or night so dont be afraid to join in and chat looking forward to getting to know you and once again wecome

hugs sarah xx a painfree day and sleep filled night are wished your way xx

frances1 profile image
frances1

I still find it hard to except fibro, I want my life back each day feels like a struggle , I still find it so hard lossing my sisters I dreamt of them last night made me cry I am so pleased have found this site we all need each other

mmariaaaaaaaa profile image
mmariaaaaaaaa

You've come to right place. Read the poem 'Diagnosis' by Terry in Poetry Corner. Hugs x

Titanaboa profile image
Titanaboa

As promised

healthunlocked.com/fibromya...

Ann-Marie x

Dmw9978 profile image
Dmw9978

Hi estellastar, I just wanted to reply to your post to let you know that you're not alone, you will receive a lot of fantastic support here from people experiencing similar issues to yourself.

I too have had to give up a career in midwifery. 😔 After completing two access courses and two years of my midwifery degree, I had to quit due to health reasons. I was also completely devastated. It's a calling, a vocation, and it's all I've ever wanted to do as a career.

I have osteoarthritis in my spine, degenerative disk disease with two herniated disks and fibromyalgia. If you want to ask anything please do.

And good luck with your pip assessment. X

TheAuthor profile image
TheAuthor

Hi estellastar

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK that hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read of your suffering and struggling and all of your medical conditions, and I sincerely want to wish you all the best of luck.

I have pasted you a link and an excerpt below from the *CAB cache entitled: Preparing for your PIP assessment. You may find this very useful for when you have yours:

citizensadvice.org.uk/benef...

*Talking about how your condition affects you

You should be prepared to talk about how your condition affects you even if you’ve already detailed it on your PIP claim form. It can be hard to do this but it will really help if you can talk about:

the kind of things you have difficulty with, or can’t do at all - for example, walking up steps without help or remembering to go to appointments

how your condition affects you from day to day

what a bad day is like for you - for example, ‘On a bad day, I can’t walk at all because my injured leg hurts so much’ or ‘On a bad day, I’m so depressed I can’t concentrate on anything’

It’s a good idea to take a copy of your PIP claim form with you. That way you can refer to it in the assessment and make sure you tell the assessor everything you want them to know about your condition.

Observations on what you say and do during the assessment

The assessor will use the information you gave on your PIP claim form but also draw opinions from what you say and do on the day. For example, they might ask you how you got to the assessment centre. If you say you came on the bus, they’ll make a note that you can travel alone on public transport.

You might also be asked to carry out some physical tasks during the assessment. Don’t feel you have to do things in the assessment that you wouldn’t normally be able to do. If you do them on assessment day, the assessor may think you can always do them. If you’re not comfortable with something - say so.

Take someone with you for support

You can take someone with you into the actual assessment if they’re 16 or over. This could be anyone who makes you feel more comfortable, like a friend, relative or carer. If you want, they can take part in discussions and take notes for you.

Include this person’s details on your PIP claim form. If you’ve already sent the form, phone the assessment centre and tell them you will have someone with you. Try to do this at least 2 working days in advance.

I want to sincerely wish you well, and please take care of yourself.

All my hopes and dreams for you

Ken

Titanaboa profile image
Titanaboa

Morning estellastar

How are you feeling

Ann-Marie x

George16 profile image
George16

Hi estellastar and welcome, I think we have probably all felt that way at some point following our diagnosis and having to give up a job you love is bound to affect you.

I am also taking duloxetine 60mg and have been since January I have to say I haven't had any unwanted side effects at all although can't say as I feel a huge amount of benefits either still struggling daily. Much love xx 🐧

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