Feeling very alone

I have just been diagnosed with overlap connective tissue disease by the royal free. With my main problem being circulation and limited systemic sclerosis. I'm starting on methotrexate tomorrow along with the bag or drugs I brought home from the hospital. I feel so scared and lost. I don't know what to do about work. I don't know who to talk to. I feel like I might as well be speaking another language when I try to tell people I'm so tired of being ill and moaning all the time

Thanks

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  • Horrid feeling when no one can relate to what you're diagnosed with. My pals just put up with my moaning and now rejoice that I'm back from the brink.... I noticed most of the I took at first had warnings about taking together, rheumy said it will be fine and I'm still here..... Don't panic all here with similar experiences, if in doubt give us a shout! Someone here will be bound to answer you. Good luck.

  • I was diagnosed 3 years ago and felt just the same as you. I read everything I could and worried about all the medication I had been prescribed but now I have decided to take the advice I have been given by experts and carry on best I can. I requested to go to the Royal Free even though it is quite a trek from where I live in Yorkshire but I feel I am in good hands there. I was told I could ring the specialist nurse there anytime I needed advice. I haven't done but know it is an option if I need it. Maybe you could do that if you need to talk to someone.

  • Hi Sami13

    First of all, don't feel you are alone with your worries. It can be isolating at times because rare diseases aren't easily understood and people tend to switch off a bit because it's hard to identify with. You're in the very best hands at the RFH and do call the specialist nurses if you need advice, on anything from meds to new symptoms, they really do care and will help to put your mind at rest. Look after yourself and take time to get your life where it needs to be with work and how everything fits in. There's always someone who'll answer you on here too, so it's good to get your worries out.

    Good luck

  • That's exactly how I felt at the beginning until I started using this site and realised it wasn't all in my head. The tiredness fir me is the worst I've got a good pain threshold at the moment. It's hard for people to understand because they can't see a physical disability. I cud sleep standing up but try to keep going for my little girl she's the only reason I get out of bed. Stay positive and try not to stress as that makes the condition worse, it's hard but try to embrace it

  • HI Sami13. Just read your post and feel for you. I have Raynaud's which came on last Feb. I lasted about 10 months before work even knew, soon as they did, they were very supportive. However, my symptoms were clear to see with fingers going blue etc. When I feel low, I come on this site and have a rant etc. I know it's hard, sometimes too hard, but everyday is a new day and you wake. Although doing the same thing day in day out, there will be folks here to listen and guide you through it. Take care and don't forget, you can sound off whenever, sometimes it's good for you lol.

  • Listen huni bun don't feel alone cause ur not!!! I understand how u feel like the rest of us on here..I thought I was dying when I was diagnosed I googled everything and it was all so negative and depressing and so so scary I'm a mother of two wee boys and they were 4 and 6 at the time I used to hold their hands and go walking and it got to the point where my hands were so painful that they couldn't do this and I became so sad and scared and seen the worst case scenario in everything. It takes time to adjust to a condition and the people around u have really no idea what its like and it's hard for them to adapt to something they don't feel! This site was my place to go for reassurance.. when I read other people's stories and where I put my fears and worries, as my doctors had no experience with any of my conditions an were no help to me .So please don't feel alone.. talk out all u need to on here and ul find its a real big help. Ive been diagnosed from 2010 my boys are 10 and 12 yrs old now and I thgt id be dead or in wheelchair being tube fed with all the digestive problems they said id have but im turning 50 nxt mths an yes its been tough but no one gets through life without issues its learning to make the best out of ur good days and resting on ur bad days.. moan all u like u need to talk through ur worries but choose a person who is full of empathy or come on here and get it out of ur system . I found my husband useless even my sister!! no one understands except those who are going through the same stuff .My main problem is Raynaud's and it does take awhile to get used to having to wear gloves even when its sunny or down the Tesco aisle to get milk the girls at the hot food counter know me now as I stop to warm up my hands on glass counters before entering the cold aisle but these are little changes iv become accustomed to, I cannot risk letting my hands go cold as the blood flow is so poor i wear gloves everywhere iv every different colour u can possibly get.PLease dont be feeling alone keep talking and educate urself on all u need to know and do .I now find im educating the doctors with all my problems and how it all effects me as they have very little knowledge of scleroderma /systemic sclerosis But the royal Free I hear is the best place ever so feel safe in their knowledge and that ur getting the right help and advice and try not to worry. I hope this helps ease ur fear and comfort you stay strong and positive and have hope x Take care Sami13 x

  • Sending you my sympathies, Sami13.

    You will find this group is a good one to talk to.

    Best wishes,

    Tim

  • Hi,

    I have systemic sclerosis, raynards, pulmonary hypertension, neuropathy in my feet, and other medical issues. Please don't feel alone because there are good folks on this site. If you ever want to talk, just let me know. I've been in a bad way since November 2015. That's when this all began. So far this year, I've been in the hospital two times. Oh, I live in Michigan, in the United States, but we have great medical care here, as well. I'm trying to remain positive, as this hit me like a ton of bricks, and my paralysed husband has to help me do a lot of things that I use to could do on my own. Currently, I'm thinking about doing yoga, but it will be on the chair, as I can't get on the floor. But, I need to remain flexible. I've changed my diet, which works when I don't overeat. I'm mostly homebound because my feet hurt, but I do have a scooter that gets me around when I out and about. Well, I hope today is a good one for you.

  • Good for you for reaching out here! That is a very positive action to take. You rock!

    It is sooo normal to feel exactly like you do. This is such a weirdo, variable and rare condition that it is hard to get information specific to yourself, and frightening to not have clear information about what is going to happen. I used to have moments of terror fairly often, but they are less now at about 5 years in.

    Things can stay stable for a long time or progress very slowly, so in my limited experience, there is time to process each day and week and come to terms with issues.

    My biggest healing thing to do is to get exercise. When I was first diagnosed I had so much lung damage that I was short of breath taking a shower. I was scared I was going to drop dead out taking a walk. My pulmonologist had to assure me, "No, you are not going to drop dead. Just stop and breathe and walk slower if you need to. But get out there and walk!" I have plugged along and can walk an hour now and I feel fabulous every time I do. Somehow removes my fears and makes me feel stronger and capable.

    You have received great advice and support already here, and I am sure you will find much more. Hugs to you!

  • Thank you to everyone for your lovely replies. They mean the world 😘

  • Sorry you are feeling so down Sami13. We do all understand. It is such a strange disease and everyone's experience of it is different. Some days it all just too much and then along comes someone (this happens to me all the time because scleroderma is making my skin dark and tanned looking) and they say "you do look well" - makes me want to scream. You will have days when you feel better. I think you will feel more positive as time goes on and you get used to the drugs and maybe understand a bit more about what's going in. Keep popping in here we're happy to chat and listen. x

  • Hi Sami, I know that feeling of being scared and isolated but you did the right thing by getting in touch. Please don't feel alone we are all supportive on this site. I hope once you get started on your drugs things will improve I find things for me go in phases and it is always a shock when you are first diagnosed. You are in the best care at the Royal Free.

    Sending you a big hug.

  • Sending virtual hugs. Amongst this group there will be a person that recognises themselves in each of the aspects that crop up in your life, it helps you to feel more normal & mainly more hopeful to talk to people who have walked some distance in similar shoes. There are so many things that we can only empathise with. But feeling alone, we might just be able to help with that! You are far from alone & we are ready to listen to each other, knowing tomorrow when we need to talk, you and a huge number of others will be ready & willing to listen & prop us us. xxx

  • Your not alone I was recently diagnosed with diffuse scleroderma triggered by chemotherapy after breast cancer,I have an appointment with a professor from the royal free in May at a local hospital,I have found. Comforting support here we are all in the same boat its great to come here where everyone understands

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