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I am new here - Extreme Anxiety over my various health conditions and managing them

Cyril123 profile image
42 Replies

I have had Fibromyalgia and Sjogrens for about 11 years now which has been a huge struggle trying to manage these. I was also diagnosed with Type 2 Diabetes not long after this. I also have mobility problems and am on quite a few various painkillers, along with various other medications. This all caused my mental health to deteriorate and I have been in and out of counseling ever since as I am just unable to manage anymore but the last year and a half has been an even harder battle as I developed breathing problems but it has taken a year and a half to finally get a diagnosis of Fibrotic NSIP secondary to Sjogrens in May 2022. I am finding this impossible to cope with and feel I don’t have a future anymore! Then if things couldn’t get any worse I was then diagnosed with esophageal dismobility. I thought that was bad enough until I became really ill 3 weeks ago and ended up in hospital for over a week with pneumonia and on oxygen. I have been signed off work ever since and am unable to do very much as my oxygen levels keep dropping. My doctor told me I could be off work for 4-6 weeks and another 3-4 months recovery. I am just feeling so lonely and keep wanting to give up and it’s such an effort to get out of bed every morning. If any one has any tips on how to manage all this I would be really grateful

42 Replies
Caspiana profile image

Hello Cyril. I am truly sorry to read your post. It is a lot for you to have going on. have Sjögren's Syndrome , Rhuematoid arthritis and Raynaud's phenomenon. I have had these for about sixteen years now. This lead to prompt treatment with biologics starting with Enbrel and the dreaded Methotrexate along with loads of pain relief. I plodded on continuing my career for a number of years until I started to experience shortness of breath. I was then diagnosed with Bronchiolitis Obliterans secondary to RA and Sjögren's. Fast forward four years I had to undergo a single lung transplant to save my life. It has been by all accounts, a difficult road. But you see I am still here three years after my operation and living as normal a life as I can. I cannot physically "fight" the diseases I have but I have learnt to somehow live along side them.

I know what it's like to feel alone and so ill. The world and everyone in it goes forward with their lives, their careers , their plans and it is easy to feel left behind. But you are not alone. Let me assure you of that. This is not the end of the road for you. It is just the beginning of a different one. By writing this post you have taken the first step positively in that direction. You will receive much support here.

Please keep in touch and let us know how things progress.

Very best wishes to you.

Cas xx 🙋‍♀️🐕

Zero02 profile image
Zero02 in reply to Caspiana

such a wise lady Caspiana.. I love reading your posts

Caspiana profile image
Caspiana in reply to Zero02

Oh wow. That's nice of you Zero. Thank you. 🙋‍♀️

Cyril123 profile image
Cyril123 in reply to Caspiana

Thank you so much for all your words of support. I am learning to accept my conditions and limitations at the moment which I know will help me move forward. I’m so glad I reached out and joined this forum as I now don’t feel so alone. I’m so sorry to hear about your long battle and glad you are still hear to talk about it. Everyone’s stories have given me hope.

Sue x

Caspiana profile image
Caspiana in reply to Cyril123

Please keep in touch Sue.xx ❤️

Greenthorn profile image

Hi Cyril i have just woken up to read your well written post and Caspiana' s reply. One thing i know for sure is that there are many members on this site who endure all sorts of problems and setbacks but who share their experiences and knowlege quite freely in order to support one another and show a helping hand. I hope you have many supportive replies and i hope you find many friends here to walk the road with you. David.

Cyril123 profile image
Cyril123 in reply to Greenthorn

Thank you David. I’ve received such a lot of support which has been really helpful.

Sue x

Hello Cyril123, that is a big burden to carry on your shoulders, no wonder you are feeling so very down and fed up! Sadly, mental health issues are more common than you think amongst those of us trying to juggle physical illnesses that sap every ounce of energy. It can be truly scary. My own mental health has been very much up and down like a yoyo for a few years now so I can sympathise. The Asthma&Lung UK helpline nurse folk are very good at offering sound advice and a listening ear. I hope you can find some comfort in knowing that here is a community who share your problems and will be here for you. It is a hard thing to try to do, but take one day at a time, or one hour at a time, and above everything else give yourself permission to be poorly - it's OK NOT to cope sometimes.

Cyril123 profile image
Cyril123 in reply to

Hi, Thank you for your words of support and tips on how to cope. I have been practicing the tip about taking hour at a time which I find very helpful in controlling my stress. I’m also telling myself it’s ok to be poorly. Can I ring The Asthma & Lung UK helpline and speak to a nurse about anything?

Sue x

in reply to Cyril123

Yes, do phone them. The last time I chatted to them was about my low mood, and the lady I spoke to was so lovely, gave me lots of encouragement and took time to listen. Xx

Cyril123 profile image
Cyril123 in reply to

That’s really good to know thanks xx

Cloudancer profile image

The excellent replies above said everything I wanted to say.

Thinking of you and keeping you in my thoughts and heart.Let us know how you get on and remember you are never alone

Cyril123 profile image
Cyril123 in reply to Cloudancer

Thank You Cloudancer. It’s reassuring I’m not alone

sassy59 profile image

I just want to welcome you to the forum Cyril and see you’ve already had some great replies which I hope help you to see you’re not alone.

Thinking of you and sending good wishes your way. Xxx❤️

Pippydo profile image

Hi Cyril, so sorry to hear you are struggling at the moment, difficult times. I think you must try to just take it one day at a time and not look too far ahead as anxiety will take over. Be positive about the small things you accomplish each day, fresh air and being outside (in all weathers) is incredibly restorative for me, having a dog helps tremendously, best wishes to you.

poppyshola profile image
poppyshola in reply to Pippydo

I agree .. having a dog or cat gives you someone to pour your heart out to, they are happy to listen, give you a hug and never answer back

Ergendl profile image

Welcome to this forum, Cyril. It's lovely to meet you: just sorry that you have such a heavy load to bear.

When I started having long term medical problems, first of all I grieved for the life I had left behind. I had to change my mental persona from someone whose worth came from doing lots of active things, to someone who supported others in less physical ways - as the lovely people on this site have encouraged you. My hobbies changed to less physical ones, which for me were singing, playing music, writing, collecting post cards and doing jigsaws - you may be able to find others, such as reading, painting, collecting things special to you, for instance.

Through these activities I can concentrate on living today, and not thinking too much about the tomorrows and the yesterdays which was the cause of much of my past depression.

Wishing you all the best as you walk down your path. Know we're walking with you in spirit, so although you may be alone in your home circumstances, you are not completely alone now that you've got us walking alongside you.

sassy59 profile image
sassy59 in reply to Ergendl

A lovely reply Ergendl. Xxx

CDPO16 profile image
CDPO16 in reply to Ergendl

As sassy said Ergendl, a lovely reply. I could do with taking a leaf out of your book as I struggle with greatly reduced abilities.

CDPO16 profile image

HI and welcome to our friendly forum Cyril. I hope that you will no longer feel alone now that you have joined us. There is always someone here to offer some support. Wishing you well.

GintyFerguson profile image

HI Cyril123, welcome to this shared space. You are no longer alone. I hope you will find words of wisdom and solace on this forum. I have nothing much to add to what has been said except try and relish what you can do even if it is finishing a jigsaw for example. Take one day at a time and dont think about the future just focus on the present and managing your conditions. Good luck.

Tykelady profile image

No one here will blame you for the way you feel. That's a lot to go through in a relatively short time. Make use of every facility offered to you and just take it a day at a time.

Souielouie profile image

I’m sending you a BIG warm HUG 🤗 everybody needs one now & again.

This is an amazing site, very informative, friendly, your not alone 🥰

Izb1 profile image

Hi Cyril and welcome to the site. It seems like you have alot going on. I have rheumatoid and bronchiectasis along with a couple of minor problems so can sympathise with you. We learn I suppose to take one day at a time putting one foot in front of the other. How are your employers treating you with having so much time off? and can you manage to work? I do hope you have a good team around you with all these health problems, by that i mean a good gp, consultant and nurse. I wish you well x

SparkySW123 profile image

Dear Cyril123, I applaud everything that folks have said. Like you. I feel so lonely at times like right now and wanting to give up. It's so hard when you have a disability that affects so many aspects of your life. I have severe COPD and have to rely on oxygen all the time. Help is out there. May I suggest you contact your doctor which is what I did and albeit a slow response, I am now getting some help via a mental health team. My thoughts and prayers are with you xx

Patk1 profile image
Patk1 in reply to SparkySW123


MoyB profile image

Good morning, Cyril. Welcome to the forum.

Well, you've certainly got plenty going on to get you down and make you feel depressed! Sometimes, that depression can be the result of all the hormones and chemicals in your body reacting to your illness, and, that can often be helped - or will settle down - as your other conditions become better managed.

I'm in a good place at the moment, emotionally, but when I look back, I realise how low and depressed I had become. Like you, I thought I had nothing ahead of me - like I'd just reached the end of the road. On top of other medical conditions, my Menieres Disease became active again after 15 yrs and I suffered from prolonged and violent vertigo attacks. I had to give up driving. For some time, I could go nowhere with confidence, even with my husband by my side. I became reclusive, feeling safe inside my home, and, as a result, I found I didn't have so many people to talk to and little to talk about.

I decided I would be an 'active listener'. I allowed family and friends to tell me anything they wanted to and I believed that, in this way, I might still have a worthwhile role in life.

This was ok and I gradually adjusted to the 'new me'. A friend gave me a lovingly covered book to use as a journal. I decided that I would only write positive things in it. At first, they were small things eg 'If I hadn't been sitting doing nothing at home, I would have missed the robin hopping about in the garden,' or 'if I'd been out and about, I would have missed the lovely phone call I had from ...'. Each day, I tried my best to think of something good that had happened, or that I had noticed, and on days that there was nothing I felt like recording, I didn't write anything at all. Not once did I record anything negative, although there was plenty of 'negative' going on at that time. Gradually, I noticed that my 'positives' were taking up more space in the book, and eventually, the balance between them became weighted on the positive side.

I started to ask my husband to take me out in the car. If possible, we would go somewhere to buy a postcard. It didn't need to be anywhere spectacular! I would stick the postcard, or leaflet, or entry ticket into my book and it gave me something to look back on if I was feeling down. Remembering a happy time (however short) would give me a lift.

Gradually, my health conditions started to become more manageable. I still have COPD, asthma, bronchiectasis, hiatus hernia (with reflux), paroxysmal atrial fibrillation, osteoporosis and osteopaenia, iron deficiency anaemia and nerve entrapment in both feet, and, although the vertigo has settled now, I still fall backwards sponatneously every few months, but I feel 100% better now than I did back then.

I'm back out in the world again! I attend the BreatheEasy group, WI, Cuppa and Cake, Scrabble, Knit and Natter, lunch club, Flower Club ,two car clubs and am happy to meet up with family and friends again. As I now feel so much better in myself, I am able to offer help and support to older friends and neighbours and I feel that I value myself again.

You are in a different position as you are clearly still working, so I get that the things that have helped me may not work for you, especially if you are a younger person (you don't say how old you are ), but I hope you'll see that if you seek out the positives, a better frame of mind seems to help everything else seem more manageable. And, with luck, treatment should help you recover from any infections you are currently fighting, which may help to reduce your depression.

You haven't said what area of work you are in. I'd be interested to hear what your working day consists of (roughly) and also if you have been able to maintain any hobbies at all (even watching TV can count as a hobby!). Do you live alone or do you have a partner? Any family?

Ignore my questions if you don't want to answer them (privacy etc) but it would be so nice to hear a bit more about you.

Best wishes and virtual hugs, ((((( ❤️ ))))) xx Moy

SparkySW123 profile image
SparkySW123 in reply to MoyB

Lovely thoughts, MoyB. I've just written down 'Seek Out the Positives. and shall find a little book to write down each day the positives, however small. Bless you x

MoyB profile image
MoyB in reply to SparkySW123

👍❤️Xx Moy

Karenanne61 profile image
Karenanne61 in reply to MoyB

This is just an amazing and positive post, so full of ideas and joy. Thankyou!

MoyB profile image
MoyB in reply to Karenanne61

👍❤️Xx Moy

CDPO16 profile image
CDPO16 in reply to MoyB

A lovely reply Moy

MoyB profile image
MoyB in reply to CDPO16

Thank you. Xx Moy

Katinka46 profile image

So sorry to hear your tale. You have so much to cope with, no wonder that you feeling so down. This is a lovely very friendly and supportive group. I know that some autoimmune diseases can manlifestbin the lungs. Please hang on here with us.

Let us know how things develop,

K xxx

Patk1 profile image

Hiya Cyril123 welcome to the forum

Mindsmatter are great and gp do recommend patients self refer.its worth reading up online + giving them a call..tomorrow, if yr able.they will help you x

Bevvy profile image

Hello and welcome to the forum. You certainly have a lot going on. I have experienced pneumonia a number of times and know how debilitating it can be - even without additional health issues. You need to give yourself time to recover and it may well take time as your gp suggests. Try to make sure you get plenty of rest, eat as healthily as possible- even if that is snacking more than meals and just be prepared for it to take time. If you are not well enough to return to work once sicknote finishes then it’s important to get another one from gp. I don’t know what you do for a living but from experience don’t rush back to work. You don’t get thanked for it, and it can make your recovery take much longer!

Hope you feel much better soon.

Madbiker1 profile image

Yes - it can be a lonely road when you have chronic illness.

I have had eosinophilic asthma for seven years. Despite having biological treatments for the last five years none have worked well enough to justify me continuing on them. Over the last couple of years I have developed other symptoms - vasculitis is now a real possibility. I have manged to remain working full time however if I get a diagnosis of vasculitis things will have to change.

Not much I can offer other than my best wishes. Lots of good people on here.

Karenanne61 profile image

Welcome to this friendly, funny and informative forum. Many of us have experienced really black times. When I had a consultation with a transplant doctor I tried to be brave and said I didn't have depression. He replied that he'd be very surprised if someone so poorly was not depressed. I love 'moy's' response. Very 'Pollyanna'. (A 1960's film starring Hayley Mills. Who, by the way, my adult daughter hates with such passion it's hilarious.🤣)

eleanordigby profile image

hey Cyril, I’m new too and am sorry you are so ill and depressed. People have already said lovely helpful things so there’s nothing left for me. But this forum seems very friendly so I think these people will help you. You are DEFINITELY not alone

Wonderboy6 profile image

dont you dare give up,people worse than you are on here,my best friend is on this sitesite and is dying. Every one on here is praying for him, so,no more talk negative, OK.

ElsaC profile image

I am sorry to read about your present difficulties. I wish you all the best, along with the many kind and supportive people on this forum.

Alberta56 profile image

Hello Cyril, welcome to the forum. I hope you like us and will stay with us and will let us know how you're getting on. You sound to be in the worse possible place at the moment, but I think, to judge by my own experience, that things will slowly improve. Take it easy and let your body recover from the pneumonia. Then gradually become more active- gentle chair exercises perhaps. Very best wishes and good luck. xxx

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