Loneliness of the illness : As I'm... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Loneliness of the illness

Littleleni profile image
Littleleni
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As I'm usually upbeat lately it's been tougher cause of not being able to have a real job, focusing a lot of time on what I can eat- what I can't, what i can do what I can't, people that don't understand cause u look okay. How do you guys find a purpose or a way to be happier when things get tough. Thanks 🐝🌻

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Littleleni profile image
Littleleni
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LucyJean profile image
LucyJean

Hello there, my first advice to you is don't be too hard on yourself for feeling low. Nobody can feel upbeat all the time, it's exhausting! You don't always have to put on a positive front, because the reality is that we are all in a challenging situation and Scleroderma is a horrible condition to contend with. Your mind like your body will have highs and lows. Everyone's mood varies and when you find yourself feeling low it is accompanied by all sorts of horrible thoughts. Thoughts about how bad things are and how bad they could be, thoughts about how no one else understands you or cares or thoughts about how you are doing all the wrong things and if only you could just do the right thing then it would all go away...you get the gist. We all have our own pattern of negative thoughts that swims around in our heads. It is better to have a cry and let it out now and then rather than putting your make up on and being a full time actress, pretending everything is marvellous. Be kind and gentle with yourself. Find a good friend and tell them about it. Or contact one of the local support groups or ring the SRUK helpline. Know that this will pass. Put things in your diary that you enjoy and boost your mood. Look at the small things everyday that are pleasant and you are grateful for. Be self-compassionate, treat yourself like you would your best friend. This is going to pass. Notice those negative thoughts and emotions, but don't get hooked into them. They are just like the news channel, telling you about all the disasters in your life. They aren't necessarily true. See them as if they are clouds in the sky passing over.

I find mindfulness, and relaxation help me when I am low and making sure that I talk to my friends and go out and distract myself by doing something nice. But other times I recognise that today is not a good day and I will just be quiet, and have an extra sleep, and a cry and wait for the storm to pass.

I can only work very part time, but I focus on the contribution I make to the team when I am there. I also can support my friends and family in small ways and that doesn't always mean about physically doing things, just be being you, you are an important part of their lives. It is hard to adjust your usual 'standards' when you have a chronic health problem but it is vital to be realistic and look for all the other different ways you contribute. I am sure you are harder on yourself than anyone else.

If I could wave a magic wand I would love to take it away from you and myself and everyone out there, but you are a strong person, you can get through this. Don't try and do it all on your own though.

Big hugs

Lucy xxx

Sami13 profile image
Sami13

This could have been written by me ! This is exactly how I feel right now. I can't go out in the cold oh or heat. I can't eat most things I'm tired all the time. I feel like I exist alongside the rest of the world not really in it All I can say is your defiantly not alone in how you feel 😘

amd21 profile image
amd21

Hey LL sorry your down, I get down too. I think we all do. 2 things work for me 1 I meditate - it really helps with both pain & mood regulation (its weird at first and believe me I really ain't a hippy or an eco or 'spiritual' I just did research & went with the evidence) 2 I try my best to be thankful for what I have and focus on that, I try not to ruminate on what I've had to give up or lost. Man having what's happen to me us f@#Β£%ng awful but I'm glad its happened to me and not my wife watching this shit happen to her, seeing her become this husk would kill me. I couldn't watch her suffer with this I couldn't bear to see her light go dim. I'm sure I sound crazy but I'd rather its me than her.

Reach out to friends & family and give them some love, reach out to others in the same boat (via here & sruk) if nothing else I hope you know your not alone with this.

Enjoy the Small pleasures Of life mate, be amazed at how soothing a cuddle is. Best to you. Alan

Wengc profile image
Wengc

Echoing what the others have said....take time to be kind to your self, rest,cry and stay in when you need to....I started beginner's yoga- forced myself to go as I am so tired and stiff- the breathing practice helps a lot, especially on the nights and days when my brain is in overdrive. It's hard when you look ok as people don't understand what's going on, but people who know and value you will, as will everyone here. Take care...

Wendy

zenabb profile image
zenabb

There is no point delving into what you can and can't is there. Distractions are very important.

Littleleni profile image
Littleleni

Thanks for everyone's support. As I usually meditate and journal, I think a good cry would help too!! πŸ˜„

in reply to Littleleni

Yep I have a good bawl sometimes. This place and other HealthUnlocked communities I've joined have provided me with invaluable companionship.

I too attend a beginners pilates class and the breathing and some of the exercises have helped me. Also, I was speaking to my very lovely and fit looking Pilates teacher yesterday about the issues I am having with sciatica and lumbar degeneration. I explained I feel too embarassed, at 54, to use walking aids even though the fatigue and arthritis have led me to collapse in several occasions lately. She advised me to buy a Rolator with a built in seat and explained she uses one for days out because she was in a car crash some years ago and can't stand up for long at all.

I was so surprised and felt so much better about the idea of saving up for one myself. Just sharing experiences with others can unexpectedly take the edge off the loneliness - even if the other person appears to be in the peak of health. There are more people around us suffering than we realise.

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