Acceptance

[Aarts]

Hi just wondered how people have come to terms with their diagnosis? I mentally get so distressed having appointment after appointment, new tests new bad news. I'm so disheartened with life even though I have so much to live for. I can't seem to come to terms with my life being so different to others my age and not being that smiling happy person I was. I was in love with life before and now I just wake up so saddened, constantly realising when i wake from a bad nights sleep that I've got to do this all again. I have systemic, ILD, Gastro issues and a c section hernia and prolapse due to everything constantly being misdiagnosed and having a chronic cough prior to getting help with reflux. As much as I want to live, I am already tired of life like this, I'm 36 and feel so lost x

[Hidden]

Hi. My son has mixed connective tissue disease diagnosed age 10. I could see his life ahead of him as a trajectory of ill health and I couldn’t come to terms with that. I researched how diet and lifestyle could help and that was something (the only thing) we had control over in terms of disease progression. Why don’t you look into anything you could change holistically to help your situation. A good nutritionist could help. Then at least you are being proactive and regain some control. My son is 18 now and off all medication and feeling well - it is really worthwhile looking into. Best wishes. Liz x

[Aarts in reply to Hidden]

Thanks for the reply, please give your son the biggest hug I'm so happy he's well. I have changed my diet, now gluten free and also I don't eat meat anyway, haven't not since age 8. I don't drink alcohol and do try to exercise where I can manage (restricted due to hernia). I just don't know how to accept this disease I just worry all the time and also have feelings of jealousy which I never had before of others around me. It's so hard as honestly my life was perfect I had wanted so bad to be able to enjoy my children and husband, watch them grow and be old with my partner and be a grandma and now I just feel like it's been stolen whilst I'm still gripping onto it. I try mindfulness and being in the moment but every time I'm smiling I catch myself going back to worry. I'm so sorry if this post is negative in any way I just can't explain this heaviness in my heart and how hurt I am.

[kimmo in reply to Aarts]

Hello … I’m sad to read what you’ve posted but can understand entirely. I was diagnosed in 1996 when I was 36 and on my own with two young girls and a new baby. My husband and I had separated prior to the birth and after diagnosis I thought the bottom had fallen out of my world. There was so little known about our condition back then I was just told it would knock ten years off my life. I remember one night putting my girls to bed and gazing at the face of my baby son; that was the catalyst for me. They needed me. How could I put my feelings before theirs? From that moment I vowed this condition would never define me as a woman and my children gave me the incentive I needed to live my life to the best of my ability, which I did. It wasn’t easy but I had my family and three best friends who I talked with and who understood. I had until 2010 and enjoyed all my children graduating from university, plus two grandchildren, before the disease struck again. Please don’t give up and let your thoughts consume you. Choose the people you can trust to talk about your condition with, you’ll soon realise who understands and is there for you. At the end of the day you are still the woman you were but with an additional complication you have been given. Allow yourself the down days but there is always light at the end of the proverbial tunnel. I used to scoff at Mindfulness, but I developed my own way of thinking much the same and I do appreciate things much more after my health scare in 2010. Tomorrow is promised to no-one and we only get one life, so we need to live it. I truly hope you find the peace you so need like I did 🥰

[marie5454]

Hi ArtsI felt so sad reading your post, you're so young to be feeling this way, perhaps speak to your gp or practice nurse or the rheumatology nurses and tell them all what you are feeling, write everything down and share it with friends and family. You still have a lot to live for and there's so much help out there and on this site, don't give up hope! I wish you well and hope that finding the right treatment plan will make a difference to your life, prayers are with you, take care and know that people are thinking of you and sending positive vibes xxx

[positivedaybyday]

Hi,

Firstly I really feel for you at such a young age!

I have Diffuse Systemic Sclerosis which came from nowhere in 2017.

I went from a very healthy active person to hardly being able to walk within six months as I have the aggressive type.

It's been roller coaster as I learnt to accept the diagnosis & fight every stage.

The difference for me is that I was 63 when this total bomb shell hit.

Part of me thought if I do die at least I've had a good life!

Your life is precious & you need to focus on the good things around you that make you smile..

Your old life has gone though your memories will always be there.

Whenever you feel really down think of something that makes you smile. It's amazing how a simple lovely thought can change your mood.

Speak to your Consultant sooner rather than later about how this life change makes you feel. They can help.

I had Physcological sessions on a 1 to 1 basis at the hospital & these really helped.

It taught me how to accept my complete change of life & also not to be hard on myself for not being able to do the simplist of tasks.

Everytime that nagging negative thought came my way to say " You're stupid, look what you've done, dropped your coffee. You can't even hoover without having to sit down & rest"

I learnt to blow it away by turning it around & saying " Look what you've achieved, no dropping of cups today & you've managed to put the washer on"

It wasn't easy but gradually the positive thoughts vanquish the negative ones!

I know it's been so hard with Covid as a lot if support has been harder to aquire.

Ask your Consultant if there are any Conferences on your condition which you could attend.

I found one of these extremely useful & there was a talk on the "mental" side

I took a friend so they could understand how the change of life & the disease was impacting my life.

I remember one Consultant saying you may lose friends along the way who generally offload to you all their negative thoughts & issues.

You can't deal with this now, you have to be selfish & concentrate on yourself. Surround yourself with positive people.

I had to do this with one particular friend, it was SO hard, she was draining me at a stage when I had to fight for my life.

She told me I'd changed & couldn't understand what I was going through.

You have a different life now, so think what you'd like to do on a good day.

It might suprise you what comes to mind!

My sister has just started an art class at the age of 75 & really loves it

Is there something you used to do which you feel is impossible now?

Is there an alternative way?

I remember not being able to get in & out of bed in the early days. I had to think of different ways this could be achieved. I did find some funny positions & movements. Once I found a way, I laughed at what a performance it had been, but also I felt proud of myself.

I had to visit hospital each week for over a year, The hospital was a 2 hours drive away. Most times my sister drove me to the hospital but if not I had support to get me to the appointments.

I know how it feels to be constantly seeing one Consultant & then another. It can be so tiring.

Listen to your body, enjoy the good days & rest on the bad days.

Please never feel alone with your thoughts.

There are lovely people on this site who can share their experiences & just comment at times on having a bad day or having a funny one.

We're here to put our arms around you & give you a big hug

Xxxx

[Barnwell]

Hey Aarts, hang on in there. Marie is right, you still have so much to live for. The hardest part is letting go of the future life you had imagined yourself living and acknowledging that things are now going to be different. It takes time but once it happens you can begin to see things more positively. The mental health impact of being diagnosed with this is badly overlooked but it was actually my consultant who said he thought I needed to get help. Can you get referred for CBT or other therapy to help with managing your feelings? And if you have loving friends and family (I really hope you do) don't be afraid to explain how bad you are feeling. When they understand what you are going through their love, support and positivity can keep you going when things seem very dark indeed. And when you start to feel more hopeful you also feel stronger and things do get better. Tiny wins (like making it up the stairs in my case) become a cause for celebration and something to build on. Stay strong, use this community, take all the help you can get and keep searching for the right treatment and support. I'm still learning how to adapt to this but I do now know that things can improve, life can still be joyful, you will find a positive way forward x.

[momo17]

Hi aarts. I have similar diagnosis n issues but have just turned 50 so really feel for you so much younger. I’ve tried all sorts to come to terms with my situation, the pain n facial changes I’ve found particularly hard but altho I do feel I’m as resilient as possible, every day is just such a struggle it is very difficult. I’ve also had trouble with mis diagnosis and poor advice. I also try positive thinking and meditation. Sometimes you do feel like nobody understands but I do n I’m sure many on this forum will. I wish I had some magic advice to give you. My saving grace is an amazing compassionate sister who is there for me always. Hopefully you have some family or friends that altho can’t really fully understand, can be there for you to listen. Look after yourself and please don’t feel alone. Post anytime n hopefully someone can help xx

[Kittyanto]

Hi Aarts, I understand completely how you feel as I am in the same situation. I am 46 years of age been active and fine all my life, and recently been diagnosed with Diffuse scleroderma and severe nerve pain and joint pain.

I just struggle every day and night as the pain is constantly there and I sometimes I wonder if will ever get better.

I have started reading books about this disease and other autoimmune problems and majority of people got an ease in symptoms by changing their diet.

If any help to anyone here one of the books is called The Whals protocol.

She had MS and was in the wheelchair in a bad way ands after lots of research she followed a diet that made her walk again even cycling.

It worth a read.

I have already made small changes in my diet and it seems to help with the swelling in my hands.

Keep positive life is precious and there will be a light at the end of the tunnel.

Try different things but especially change your diet.

Wish you all the best and stay strong.

[ClaireSey]

So sad to read your post. Having read your responses I feel uplifted myself... I so wish that for yourself. None of us want to be on this journey but I do feel we all have each other on here. In my dark moments I read a lot of these posts and take comfort from the advice positivity and warmth from the amazing and brave people on this forum... I do hope you are getting the best possible care and treatment. You are my thoughts.... Xx

[LadyTrundle]

Very sad to hear how low you are Aarts, and echo all the encouragement and love others have expressed here. So important to be kind to yourself. I hit a really low point a couple of years ago when I was suddenly whacked by immobilising pain (not related to Scleroderma) and really felt the life I was left with wasn't worth it. But I turned to my GP who referred me v fast to a clinical pshychologist, who prescribed an anti anxiety drug with extra benefits (muscle relaxant + sleepiness but only at night) called Mirtazipine. And the Rheumatologist (again, not for Scleroderma but is was she who spotted it along the way) referred me to a CBT for chronic pain group. I was based in Camden in London then. That has given me so many tools both for dealing with and to an extent easing the experience of the pain, and mentally and emotionally. So ask if there is a similar group run by your local MSK/ Rheumy team?

Also depending where you are based, is there a regional SRUK group covering your area? I've attended 2 zoom meetings of our new Sussex one (I guess most will be largely zoom still) and it was so uplifting, almost joyful, to realise there are people out there who do truly get it and are supportive - a new family. A source of advice and anecdotes - both meetings we've ended up having quite a laugh over our predicaments. And laughter is such a powerful drug.

The other thing I'd add to those who have mentioned diet, is that I've been doing reading etc about the microbiome and the value and impact of a very varied diet, also of intermittent fasting. But vegetarianism might not be the best thing (for you) as you need to make sure your body has all it needs eg amino acids. It does need reading about, but there are some easy principles too. One book by Tim Spector (of the Covid Zoe app research fame, from Kings Hospital) is called 'Spoon-fed'. And another is by a colleague of his in the States, Dr William LI, called 'Eat to Beat Disease'. I haven't read them thoroughly yet, but have listened to talks. There's some evidence that the way of eating they recommend can ease inflammation (and other things, depending on what your issue is and what you therefore eat) AND some evidence that intermittent fasting can kind of 'reboot' your stem cells and immunity, which might have a positive impact on things like scleroderma. And yes, he does use the word scleroderma in the book!

And as others have commented, at least by addressing your diet it's one contribution you can make towards all the efforts the medics are putting in for you. For me, doing some exercise (however light) and some meditation and deep breathing cycles every day is also my contribution. Tai chi or qi gong (which is gentler) combine all three things for me.

So don't give up, please. And do talk - to us, but also as openly as you can to your family and friends. x

[LilyInTheSun]

Hi Aarts,

I'm so sorry you are feeling so low and overwhelmed. How long have you been diagnosed for? And are you being seen by a scleroderma specialist, because getting on the right meds as soon as possible makes all the difference.

I was diagnosed 11 years ago, at 28 years old (I'm now 39), and have diffuse systemic scleroderma that was pretty aggressive early on. I probably had the disease for at least a year or two before I was diagnosed, as well.

It can take a long time to come to terms with a diagnosis like this, and that's totally normal. One thing that helped me was meeting other people with scleroderma and finding out that it wasn't 'all downhill from here'. In fact, with the right meds, some of the symptoms can be reversed and others can be controlled so that they don't have as much impact on daily life. I'm on mycophenolate mofetil, and it's made a big difference, although it did take quite a long time for the improvements to kick in, so you might have to be patient.

Some things that have improved for me:

-I no longer have joint pain like when I was first diagnosed

-My joints aren't as swollen, so things like kneeling are easier

-My skin that had hardened has softened in some places, and hopefully will continue to

-My reflux is really well controlled with meds, so not too much of an issue

-Although I have ILD on scans, this is now stable and I don't have any noticeable symptoms

-Although I had gastric issues, I was able to identify that I'd developed an intolerance to onion, so eliminating this from my diet has made a big difference (see the FODMAP diet)

-My fatigue is a lot better

I still have times when I get down about my health, but these things help me:

-Trying to keep things in perspective by thinking of people who have things worse than me

-Looking for the small positives in life and being grateful for them

-Trying not to think about my health too much - I know this is difficult when you have lots of appointments or symptoms though

-The usual health advice: getting enough rest, eating healthily, exercising

-My Christian faith. Prayer is very helpful.

I don't have children like yourself, but I've continued to work full time, volunteer at church, run my home (with my husband), have holidays, and socialise with friends and family. So your diagnosis doesn't mean you can't have a full and enjoyable life. It might just take a bit of time to start feeling a bit better. So be encouraged!

And like others have said, do consider counselling or therapy, and join a scleroderma support group, so you have others you can talk to about how you feel. That's really helpful too and can help you process things.

Take care and keep going!

[Aarts in reply to LilyInTheSun]

Hi I've had skin issues for 6 years and ILD was missed from scans initially from 2.5 years ago. They didn't know what my skin issues were all that time ago. I was diagnosed July this year after having to pay privately for diagnosis which I think is why I'm so disheartened (I wouldn't have the prolapse/hernia if they had listened to me). I was diagnosed July and been on mycophenelate since then (7 months) I'm hoping that it has stabilised my lung disease but don't know yet. I don't yet feel any better. Im at the royal free on Wednesday for initial appointment. I just hope to be able to have hope from this appointment as im so scared of medication not working x

[LilyInTheSun in reply to Aarts]

That's so frustrating that you had to pay privately to get a diagnosis, and that it took that long. I almost got the point of paying privately too, after being fobbed off by doctors for ages. I ended up having to having carpal tunnel surgery in both wrists (I now know the carpal tunnel syndrome was caused by my scleroderma), and it was the surgeon who told me to ask for a referral to a rheumatologist after seeing my hands go blue and realising it was all connected. I'm so grateful to that surgeon. Once I saw a rheumatologist, I was diagnosed with scleroderma and put on methotrexate, but didn't see any improvement with that. After reading up on forums, I asked to be referred to the Royal Free, and that was when I was put on mycophenolate and things started to improve. So I'd probably had symptoms for about 3-4 years before I was on mycophenolate.

I'm so glad you've got an appointment at the Royal Free. They are excellent - so knowledgeable about the latest treatments and research, and really thorough. You'll be in excellent hands. They also have specialist scleroderma nurses who are really helpful, and a specialist nurse phone-line you can use if you have any questions or concerns.

It's great that you're on mycophenolate already. Apparently it's a really good med for controlling lung disease, and my lungs have stayed stable the last few years while on it. It did take quite a long time for me to see improvements like skin softening (sorry, I can't remember how long, but definitely more than a few months), but persist with it and hopefully you will also see some improvement. The first couple of years after diagnosis were the worst for me symptom-wise, so I totally get how it feels overwhelming.

It's also worth bearing in mind that with diffuse systemic scleroderma, it's most aggressive in the first 3-5 years, and then naturally tends to plateau, so you should see some improvement over time anyway. My mycophenolate dose is gradually being reduced, and I seem to be staying stable now.

And one other thing - at the Royal Free, they will probably give you lots of info on things you can do yourself to help. One of these things is finger exercises. Please do make an effort to do these each day (just a few minutes a day), as the evidence shows they do really make a difference. I didn't really do these much and now regret it as my fingers are starting to curl quite a bit. Prevention is always better than cure, so learn from my mistake!

I hope the appointment goes well. Let us know how you get on. And if you have any questions, or need someone to talk to, just message on here, or direct message me. Take care x