my story and finding it hard to accept the change

jayuk

I thought I would write down how I am feeling and to process the changes I have been thought.

I've work all my life but always struggle with fatigue, aching joint and back pain and everytime doctors done bloods tests everything came back fine and this was on going for years.

In 2013 things really changed and I didn't feel right I couldn't concentrate and had zero energy all my joints hurt and getting headaches also was walking around sighing all the time.

I went back to doctors and doctor was reluctant to do blood tests as I had them done 15 months earlier, I was told I was depressed and was given a questionnaire to fill in and when ticking the boxes I thought I must be depressed as I was putting a tick in all the boxes.
A week had passed and couldn't cope with the way I was feeling so back to doctors I went, cut a long story short had blood tests and showed my thyroid levels were high 21.6 and should be below 1.

Started on medication and even after 6 months still didn't feel better was also diagnosed with b12 and folate deficiency but still no better.

In 2014 I got diagnosed with fibromyalgia and chronic fatigue by consultant and was told that people with thyriod problems are more likely to get fibromyalgia.

 I learnt how to pace myself and rest my body when I could,i went to back classes to try and strengthen my back but this just aggrivated it and all this didn't help.

I was struggling with work but determined to fight through it and carry on.

I realised I was losing the fight about 2 years ago, I was crying going into work thinking how am I going to get through the day my mental health was getting worse and then work wasn't being supportive and also putting me on a late and early knowing full well I was unable to do that and then saying they couldn't accommodate it on the rota when I they had accommodated it for over a year, there was other issues too but I had just had enough and couldn't cope and went on sick.
After a year on sick it was agreed I would be dismissed and i felt low but learnt I could nolonger do my job or even sitting at an office desk would cause my pain to be worse. Oh and going through perimenopause too and that's another story lol 😆

I feel useless and having to go through the benefit system has been hard work and stressful as they don't make it easy, I miss
My life I had even tho it wasn't much of a life as it was work and rest as that is all could do and now I feel like it's a different worry because you have to convince people you don't know that you are to ill to work and if you fail then you are limited on money and have to do something your body can't do.
Now with everything going up how are we supposed to live when they already give the bear minimum, I know I get pip ect and know people are in a worse position then me that don't get any top ups, it's so unfair you already feel degraded for having to ask for handouts life is just unfair.

Is anyone having a hard time accepting how there life has changed.

Alex_Alumni

Thank you for sharing how you're feeling @jayuk it takes a lot of strength to be so open and honest, so well done. 

I think a lot of our members can resonate with the feelings you've expressed. It can be wearing sometimes when you feel like you're asking for too much, or feel guilty, or are tired of having to 'prove' how disabled you are to get the help you're entitled to. 

That's why talking about it can be a big help, in knowing you are not alone, others feel the same, and that we can support each other  

If there's anything more we can do to help, please don't hesitate to ask, I know this can be difficult, but even if it's just someone to listen, we're here.

SueHeath

Bless you @jayuk sorry to hear your not feeling good about things at the moment,
It can feel rubbish more so when things start going wrong with our body and we have no control over it. It seems to be that we have to re look at our life and change to fit, if that makes sense. You might be depressed with it all and i hope you have a good Doctor that can help you with this.
Do you have friends and family around you ?
There are a lot of us on the scope site, so join us, I find the virtual coffee lounge a great distraction, when it's needed.

I do look forward to seeing you around the site more.

jayuk

Thank you both for your replies.

 I feel some days I find it easier to  cope with in my mind and other days I find it all a bit too much.

I just find mentally I can't win and over think to much about things.

 I have a really good doctor who has been so supportive and have a good family.

carolep62

Hi @jayuk, thanks for sharing, I think a lot of us can totally relate to how you are feeling. 

I used to have a very active Job, I would be on my feet all day then walk the 20 minutes home without bating an eyelid. I loved my job, I loved walking for pleasure but since being diagnosed in 2020 with breast cancer and having to have 6 months of chemotherapy, radiotherapy and surgery I feel like I have aged about 10 years. I have been left with nerve damage in my feet and fingertips which is very debilitating and also get fatigued quite quickly. 

It can be hard coming to terms with these changes and yes it does get me down. Like yourself I have the support of my family and partner, it is still a lot to come to terms with though when your life changes so much. 

I find it helps to take one day at a time and to be grateful for the things I have and the things I can do, not always easy but trying to stay positive does help, it also helps to know that these feelings we have are normal and that we are not alone. 

You have been through a lot but have managed to get through and prove that you can have a fulfilled life even with the hurdles you have had to overcome. You should be proud of yourself!

jayuk

carolep62 said:

Hi @jayuk, thanks for sharing, I think a lot of us can totally relate to how you are feeling. 

I used to have a very active Job, I would be on my feet all day then walk the 20 minutes home without bating an eyelid. I loved my job, I loved walking for pleasure but since being diagnosed in 2020 with breast cancer and having to have 6 months of chemotherapy, radiotherapy and surgery I feel like I have aged about 10 years. I have been left with nerve damage in my feet and fingertips which is very debilitating and also get fatigued quite quickly. 

It can be hard coming to terms with these changes and yes it does get me down. Like yourself I have the support of my family and partner, it is still a lot to come to terms with though when your life changes so much. 

I find it helps to take one day at a time and to be grateful for the things I have and the things I can do, not always easy but trying to stay positive does help, it also helps to know that these feelings we have are normal and that we are not alone. 

You have been through a lot but have managed to get through and prove that you can have a fulfilled life even with the hurdles you have had to overcome. You should be proud of yourself!

Thank you for sharing your story.

You have been through so much and still going through it.

I have a friend who has just gone through chemo as she was diagnosed with breast cancer and now suffers with pain and not able to sleep .

It must be so hard to get through every day you seem a positive person and that will get you through the bad days i wish you all the luck in the world. 

L_Volunteer

Thanks for being supportive @jayuk. I am sure that will be appreciated on this thread. 

How are you feeling about your friend being unwell? We are here for you if you would like to share more with us