Scleroderma & Raynaud's UK (SRUK)
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feeling low

Hi everybody, I am afraid that my get up and go, as well and truly gone. I have spent most of the day sat in chair watching tv. Normally I can dig myself out of the hole I have dug! I think part of the problem is that I feel terribly alone, apart from doing my supermarket shopping, which I hasten to add I always do on my own, I have not seen anyone to have a meaningful conversation with!! My daughters are always busy, and even if they see me they never ask how I am. Sorry if I am letting the side down, but its just how I am feeling at the moment, so I will leave you all with a melancholy smile and wave folks, smile and wave.

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Fairy56,

Its horrible to feel lonely and isolated it makes it so much easier for our dark thoughts to get hold and prey on our vulnerabilities..

I'm sure your daughters don't realise how bad you feel.. Tomorrows another day. Sending you a big hug and lots of positive energy .

Cathie x

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Thanks so much for your hug and encouragement x

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Hi Fairy56, I am in a black hole at the moment also. Never in my life have I been this bad - but just pushing through as best I can. Really wanting to isolate myself but knowing that if I do go out I will feel better afterwards. Summer is coming so bring on the sunshine. Maybe you live near me where are you from? We could meet for a coffee. xx

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Hi Mylreaclairelee, I live near York, xx

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Hello, I lived in Copmanthorpe for 37 years before I moved to the NW. I think you need to make an effort to get out of the house, but I don't know how mobile/active you are and it is difficult when it is cold. Go for short walks around your local neighbourhood, wear something bright - pink scarf, red hat, smile at people - you will soon be recognised.

Have you thought about volunteering. I worked as a volunteer for the National Trust at the Treasures House, east end of the Minster, for many years. Not the warmest place to be and the toilets are down a steep flight of stone steps, but they also have Noel Terry's (chocolate) place on Tadcaster Road which you will find more accessible. They will pay travelling expenses if needed. They also organise trips to other NT properties. I am sure that the Merchants Adventurers Hall, Barley Hall, Art Gallery have volunteers also, as well as the charity shops. You have easy access into York with the park and ride.

York libraries have reading groups, craft groups and often need people to help with shelving.

Asthma Bryan College has a large gardening club. Meetings in the winter and trips in the summer. I know it is daunting walking into a room on your own, but they ask new members to make themselves known and you will be paired with a "befriender".

Local primary schools often need people who will do one-to-one reading sessions with less able pupils.

The U3A, university of the 3rd age, is also very active in York, they run lots of courses.

I hope you can make the effort to try something, Best of luck.

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Hi fairy56 I know how hard it is to pull yourself out of that hole but you have to push yourself. I was in that hole about 11 years ago when I was diagnosed with systemic sclerosis. I now go to aqua aerobics five tomes a week and walk my dog once a day. I was in a wheelchair for a while and then a walking stick and now waiting fir a full knee replacement as well. But you know what you have to tell yourself that this illness will not beat you. You have to pick yourself up, dust yourself off and keep going. Otherwise you will give into it and become very ill. It is not easy but you can do it. My lungs are involved, my bladder and bowels are affected and my oesuphagus is also involved as I get very bad reflux and just had an endoscopy which shows I now have a Hiatus hernia which is causing more problems. I say bring on the next organ involvement and I will hit it head on. I swallow 47 tablets a day for various parts of scleroderma including blood pressure which is not very well controlled at the moment. I have a reasonably good life and try to remain positive and it will not beat me. Bring it on I say. If you want to chat I am here to inject you with some positivity. It is a scary illness but you can maintain a reasonably good quality of life. I live in Brighton and I have a rheumatologist here and I am also under the Royal Free as well.

Best wishes to all you fellow sufferers. Xx

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Hi lmbdmb, thanks for your reply. I am normally a fighter, but just momentarily can hit a downer, its not just the Ssc and Raynauds, I also have depression to live with. Your reply made me realise I am wallowing and should throw back my shoulders and push on, you have far more to live with than I do, and I admire your strength. Many thanks for your encouragement and tomorrow is another day, bring it on, smile and wave, smile and wave x

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It's OK to wallow for a day or two - and then kick wallowing's butt and move on. We all get tired of the rubbish we have to deal with. I look forward to sunny days to give me a boost. And it's great to vent - so many deal with the blues. xoxo

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Dear Fairy 56 please remember we are all human & have days & more of deep despair, self turmoil & stress. Please allow yourself time to be recharged & gain a little energy, both physically & emotionally. I can understand your sense of isolation & loneliness & the inability to do a lot to change it. Yes I do understand. When I am like this I seem to have no energy & really retreat from the world. LMBDMB you are so strong in your ability to keep up the fight & I admire you so. I wish you all the best. You too have an understanding of how far these illnesses can make us fall. In spite of those days of anguish & isolation I always think it is important to realise how brave we all are as we endlessly deal with illness & constantly fight a battle which can not really be won! Fairy56 it sounds as if you are already 'dusting yourself off" as you think about how to cope. Please go easy on yourself, be kind & caring to yourself as you become a little more resilient & less weary.

Thinking of you both, XX Pixiewixie.

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Thank you Pixiewixie you are also a trooper and all of us with this illness are troopers. There is no easy way of dealing with this illness. I find trying to remain positive helps. Do you know the one positive of having scleroderma with the tightening g of the skin especially around the face is you will never have wrinkles lol. I found that a positive and although I have grey hair my face is smooth and line free. I try and laugh at least once a day. Have a good day everyone. Try and keep your chin up it is hard some days but it can be done. Xx

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It’s the time of year when the dark and cold of winter can be a problem. Check your vitamin d levels. Also, make it a point to find someone to talk to. Is there a hospital or nursing home nearby where patients could use a visitor? A neighbor or friend you could connect with? Or perhaps find something which used to bring you joy, listening to music? Creating art? Cooking? - To shift the focus from your feelings at the moment. It’s normal to feel bad sometimes, hope tomorrow is better!

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Hi, fairy56. I live in the United States. I visit an online scleroderma forum here called Inspire. I mentioned you there as I love your "smile and wave, smile and wave". You just don't know how much inspiration you've given me just from that. You reached miles to give me hope. I'm actually in tears as I don't know how to give back to you now. I too have three daughters and I know exactly how you feel. I've had those moments. Don't expound on them. It does seem like my only adventures are to the supermarket, doctor's office, drugstore and church. 😏 But, it's a sign of the time. Everyone is to themselves, on their phone or other devices (see, look at us now). We're not the only ones to ourselves.🙂 On the other forum, they have a post on what one wants to do as soon as the weather warms...outdoor projects. The green thumbs, spring cleaning ideas, rain chains, and images are inviting. Maybe someone can start a post here. I also like the post where they list tips on what items are of great comfort and help to them. Be blessed and know that your "jingle" stays on my mind everyday. And because of you, my heart stays ready to wave and smile at all that will receive it.

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Hello intimeslikethese, thank you for your lovely reply, and to think that my "jingle" has crossed an ocean! Wow, because I have Ssc and Raynauds, I have reached people I dont know, that has to be a big positive.

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Hello Fairy56. So sorry to hear you are feeling down. Please remember you are not alone - everyone here understands the feelings you get while trying to manage the bad days. It feels pretty hopeless sometimes. Let's all look forward to spring, sunshine, and warmer weather. I think you need to seek out friends, neighbours and just chat. It does lift the spirits just talking to others about anything. I find it so easy to avoid meeting people when I'm feeling tired, ill, or just plain grumpy because my life isn't how I would like it to be. But when I do socialise a bit - I feel different again and back in the world of the living. You are in my thoughts xxx

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Hi there. I often have times like this .and being ...alone does not help

But you are not alone we all have days like this. Sometimes mine are months. If you can't turn it around that day just ride it it will get better. Turn your day in front off the tv into a cosy day. Watch your fave movie listen to music what ever makes you feel comforted good food ECT. Dont beat your self up . Thse next day will be better. Tou have alot to cope with so you are entitle to have these days. Just ride it when you can'tfight it and fight it when you can. Have a cosy day. Hugs. Xxx

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I hear you! Unless you have these autoimmune diseases, people can only try and imagine what we go through, am I right ?. I’m all of a sudden depressed too, which happens in the winter, but also just so tired of being sick and tired! My systemic scleroderma is full blown , my digestive system is a wreck, and I’m fighting off small B cell non- Hodgkin’s lymphoma, and going on 4 years with pulmonary hypertension! I’m over it now! I’ll be more positive hopefully soon! I’m just going through something! God Bless you and heal you!

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Fairy56 l think your post was very brave. I get heartily sick of people telling me how wonderful l am at coping, it’s nobodys fault but they don’t understand the complexities of Sclero and secondly l am not wonderful as like you l sometimes feel just giving up and staying home in isolation. I know some hospitals have a specialist sclero nurse you can call and l think the SRUK have a helpline. It’s just so important to interact with people even on a basic level at the checkout or whilst out on a short walk just saying hello as someone passes. Our winter is not pleasant but we are on the way to March and spring soon. Remember every day you have is a precious thing even if you are just lolling around. I know it’s hard not being as active as you once were. If you are staying home indulge yourself with scented candles and new pyjamas or anything that makes you feel good. We are all thinking of you and you are certainly not alone. X

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Hello bluesgirl, thank you for taking the time to reply to my post, I have since updated how I am feeling, had a better day yesterday, and even better one today. Love and hugs.

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