Feeling low : Hi this is my first time posting but... - LUPUS UK

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Feeling low

Creamcrackered
Creamcrackered

Hi this is my first time posting but like so many others it helps to know you’re not alone.

I was diagnosed in October last year with SLE, Infamortary Arthritis, Fibromyalgia and Sjögren’s Syndrome this all came on top of just being medically retired due to chronic pain following major back surgery in 2016, so life just threw another hurdle my way.

However in some respects at least it gave me an answer as to why I have been feeling so unwell.

But little did I know how unwell I was going to feel, I was started on Hydoxychloraquine and prednisolone and some months later Methotrexate all I can say is how chronically tired I feel with sore joints and muscles all the time plus the added bonus of chronic back pain, just to cheer my day.

I have a good rheumatologist and speciality nurse, my gp is pretty good too, other than that I have an 11 year old to look after on my own and elderly parents who need my help and support daily!

My fanatical worries are on top of this as well as I still waiting on PIP 😔

I don’t know what I expect from me writing this but it helps that I feel someone is listening, it can be very lonely battling such a horrible disease.

Thank you for listening ☺️

8 Replies
oldestnewest

Hi

You’re not alone! I’ve just been recently retired from NHS on ill health grounds too. I’ve got lupus, fibromyalgia, mixed connective tissue disease and shrinking lung disease due to lupus. I get so depressed too. You’re right- it’s great to know what you’ve been suffering from for so many years. I’m lucky as my husband supports me and my boys are older then yours. It must be so difficult for you. I’ve just got my PIP awarded!! Took months though 😬. You’ll get there huni. Try to remember there are people who understand Out here xxxx

Hey thank you for replying I too worked for the NHS, I miss it 😔 I’m glad you have support from your husband and great news that you’ve got PIP, I had a local charity come to my house to help complete the ‘book’ ! It took hours to fill in, I suffer with carpal tunnel in both wrists which is quite severe so find it hard to write.

I hope I’m awarded PIP as I’m really struggling financially, it’s such a worry.

Thank you again for replying, it does help. ☺️

Morning CC, love your handle by the way. I am so sorry you are feeling so unwell, this heat in the UK is triggering may Lupus patients at the moment, myself included, and like you, feel terribly unwell just now.

You are not alone, far from it, and if by writing what you have, got some stress out, that is a job done well. All I can say, is, from my experience, is you have to do what works you for you to get by daily, if that means going to bed at the same time as your son, so be it. Is there any way you could seek some help for your parents? I do not confess to know outside organisations that can help, but one excellent organisation who might be able to throw you a little lifeline, Age Concern.

healthunlocked.com/lupusuk/...

In the meantime, know you are not alone, we do care here, and please be very kind to yourself, lots of rest when you can.

Hi thank you for replying it does help having someone to talk to.

Getting help for my parents is difficult my sister lives in New Zealand so not exactly round the corner 😂 Age Concern have been great but it’s the day to day tasks and getting my mother to accept outside help which is the biggest hurdle!

I think one of the hardest things for me personally is that I’ve had to give up running and mountain biking, I’ve always been so active now I can hardly get up the stairs and the weight is piling on, so depressing.

I walk every day, through constant pain from my back and of course the delights of Lupus it’s ‘my time’ time to reflect on what’s been thrown at me.

Depression is a big part of this as I’m sure everyone is aware, thank you Lupus Uk for being there. ☺️

Imom
Imom
in reply to Creamcrackered

Hi CC, I feel your pain. I was a walker my entire life until last year. Now, I can no longer walk due to bad knees and back pain. It,too, was my thinking time. At least you still have that! It is depressing. I was diagnosed a year and a half ago and am still trying to adjust to the fact that I can’t do everything I used to do. I don’t feel like myself any more. I wish you well, especially with your folks. My husband has mild dementia and he drives me nuts!!! Sending you hugs!

Hi!! Wow it's incredible to hear eveything that you're coping with! You should feel very proud of yourself :) The steroids can make us feel low as well, even if we don't want to! It's hard work to fight against this, but it's worth it. Think about nice moments you've had, exciting things!, love yourself :)

X

WoW that's a lot... I and so many others will completely understand how you feel. I'm glad you're on the right track and have been diagnosed. It must be a relief knowing that there's a reason why you're feeling so run down and always in pain.

I send healing Reiki to you and happy thoughts of being better at some point. Keep in touch, don't be alone 🌻🌻🌻❤

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Creamcrackered,

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you may like to download or request here: lupusuk.org.uk/request-info...

Have you got any friends or family members who may be able to help you? It is important to take out some time for yourself each day – such as meditating for 10 minutes every evening. Stress is an important trigger of lupus, we published a blog article discussing stress management and relaxation techniques which you may like to read here lupusuk.org.uk/stress-manag...

We published a blog article on managing finances; I hope this article will be of help to you lupusuk.org.uk/managing-fin...

To read our blog article on ‘pain management’, click here lupusuk.org.uk/pain-managem...

If you need any information regarding PIP i.e. appeals and reconsiderations please email me at Chanpreet@lupusuk.org.uk

Please keep us updated, wishing you all the best!

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