Just that really.
The days of being unable to do anything, then the days of rest necessary to recover.
The fatigue in between flares.
For a few years I’ve acted upbeat and ‘get on with it’. My normal way of dealing with negatives. But Im finding it increasingly difficult.
I just want to send you over a hug and a cuppa . I’m sorry you feel like this but I do understand . Please be kind to yourself 😘xxx
Thank you. I appreciate that very much.
I have M.E.. I get you. But I find it is worse when you don't accept it. extra energy to spend on fighting it, that I don't have. I struggled with this for years and then found a therapist, which was really helpful, and helped me find some form of acceptance, which has improved my life (if not my illness). Might be worth a shot for you too?
You are right. Fighting it is futile and a waste of energy! Thank you for taking the time to reply Murtoz
Morning IsleofWight1
So sorry to hear how you are feeling.
I also struggle with this so called new life.
My mental health has really taken a knock.
The lupus team that I'm under at Southampton General Hospital have a new trial working alongside a clinical psychologist. I've been lucky that I have been involved with this.
It has helped me try to understand my feelings and develop strategies to improve my lifestyle.
It will never bring back the old me but will help me become a new me.
Big hugs to you 🤗 ❤️. X
Hi JCZW, I just want to ask you if the clinical trial in Southampton General Hospital is for new medication for lupus?
Morning Kali9No I've been on my current medication since 2020.
I was told on one of my lupus appointments that the hospital were trialing working alongside the clinical psychology department and was I interested in taking part.
I have had many appointments with the clinical psychologist and it has been extremely helpful.
Hope this answers your question.
It is extremely hard to accept how much lupus changes our lives - most of us have felt exactly the same at times. And sadly, it’s rare that your rheumatologist will ask how you’re actually feeling.
I do recommend NHS talking therapies - just Google - you can self-refer and they really listen to you. I think you usually get six CBT sessions.
There are also many YouTube videos by Hertfordshire and West Essex Talking Therapies on mindfulness, pain etc. which are also really helpful.
Thank you Mary.
I’m glad you have found something that helps you. I will definitely have a look into it.
Best wishes
Hi IsleofWight1
I'm sorry that things are feeling difficult at the moment. It's really understandable to be feeling a bit sick of dealing with the symptoms and having to constantly manage your life around them. But you are not alone. I know it can be challenging to reach out when you're feeling this way, but there is support available and people who understand what you're going through. You are not alone and your mental health matters just as much as your physical health.
Alongside the links others have given to the NHS support available, I just wanted to mention the Wren Project. This is an emotional support service specifically designed for people with autoimmune conditions, and you can refer yourself without having to go through a GP. You can find out more about them here: wrenproject.org/
Please also feel to give us a ring on the helpline if you ever just want to chat things through or have a vent on 01708 731251. We can also put you in touch with other people with lupus via our Groups or Contacts if you'd like.
If there's any support I can offer or information I can find for you, please feel free to get in touch with me any time at Debbie@LupusUK.org.uk
Take care,
Debbie
I may well call you soon!
Thank you Debbie. I have referred to the Wren Project. I think it’s just what I need.
It was with mixed feelings that I read your response. Initially, wonderful that Lupus UK exists and is able to give such great advice and support, I do so hope that IsleofWight1 finds so too. I think we all know how they feel. Then, I felt quite deflated. Why oh why hadn't my Rheumy department let me know about the wren project as a matter of course. Most days I can managed and blunder my way through life, taking joy in 'good' days but other days the disease (I have Lupus Lite UCTD) can become overwhelming or we just face the battle of getting timely support for new symptoms / developments. Thank you for letting us know about this.
Hello IsleofWight1. First thank you for the photos of the lovely place you live or visit? I am in the US and had never heard of it before. I looked it up and scouted out places to stay lol. Enchanting and also could be a perhaps lonely place I thought too as small and removed from people you may be.
I’m just going to give you my own story in a very diluted form. Finally diagnosed in 2016 with lupus and continue to collect its friends. I had been unwell for 25 or 30 years prior as I raised my kids. Could never get clinical symptoms and blood tests to co-ordinate. Always knew I was not right and I feel cheated sometimes from my fatigue hazed parenting.
I should add that in 2019 I also was diagnosed with a complicated spine problem. Really? Isn’t enough enough?
I don’t think there is but just one thing that pulls you up and pushes your ass forward to the next chapter in your life. Counseling helped the most. A few friends. My dogs’ fur is still holding my tears. 
walks, good books, my sister and brother. Eating icecream. Hell with inflammation in the beginning: just give me a pint of mint chocolate chip and a spoon.
I lost some friends and gave up some on my own. People who had not suffered in their lives simply had nothing to offer. In 3 years time I collected 3 dogs. :). Eventually I read my Bible again.
This is how I think; and I hope it helps you too. My illness started a new chapter in my life. Just like the happy stuff like starting a family. Or having your father in law live with you 6 months out of the year. (Yep!). We adapt. Each chapter requires us to change whether or not you have a chronic illness or not. My challenge to change and chapter of life is friends and acquaintances who move away for retirement or they die. Either way the emptiness is stark. Moving on from my deep sadness diagnosis fatigue was the hardest thing I ever did. But it sure helped me accept the loved ones leaving and moving on.
I love the beach. We are 5 hours from the Gulf of Mexico. I go in the winter now. I knit and sew and still hate to cook:). I garden and swim like an old lady/at 66 my kids’ think I am. I joined (I’m not a joiner!) a writing class and take piano lessons. So much of this stuff I never would have done.
I’m going to end with coping with fatigue. Don’t fight it. Sleep and rest. Perhaps try another medication. My Rheumatologist absolutely hates that I’ve added a small dose of prednisone to my hydroxy and I do not like it either. But my quality of life improved. I hope something in here resonates for you. I hope you continue sending us your beautiful photos!
Mrs Marigold what a lovely reply fro you.
Yes the Island is indeed very beautiful and I love to walk the coast and the countryside. I’m so lucky that I live here, surrounded by this beauty.
You’ve made me realise that it also makes it harder to accept that I can’t go out to enjoy it in the way I want to.!
Sorry I’ll have to continue this later.
I also can relate to that. Living in a tropical environment I am now housebound 5 months of the year. And instead of my usual 3-5 mile walk every other day I’m just now trying to figure out my new tolerance for walking. It’s pretty much half a mile I think. What I’ve decided to do is take a short drive to various places in our town with one of my dogs and get different scenery:).
Hello IoW,
I would like to recommend Medito, which is a free App for mindfulness and meditation. It has helped me to come to terms with some difficult life changes, including severe fatigue. You might find it worth a try.
With all best wishes x
I empathise. Most of the time I feel I'm a lot better off than most and then every so often I just get really p***** off with being in constant pain. I get over one thing and then it's another. Sending hugs. X
That’s me too. When I’m good I can be fantastic but the dive down gets further and further.
I am so sorry to hear that you are struggling with the changes your diagnosis is forcing on you. Yes, it's hard to get your head around the way you now need to live your life and it makes you want to scream and shout but, unfortunately, you have to accept that it is what it is.
Have a good cry ( in the bath is where I do mine) let your family and friends know how you are feeling, accept their love and help and you will get through this xx
I so understand, I too have just started this journey mid 2023....first thought I had was, I have got this I will work through it, had no idea the difficulties lying ahead!We need to adjust to a completely different life and yes acceptance, thats the difficult part especially when we have been on the go, up for doing things, now walking to the bathroom is a victory🫣Everyday holds a new challenge, but together we can do it, I am finding chatting to ones who have experienced the awful symptoms of autoimmune diseases for years, so encouraging, big hugs today for you, I feel a bit like you are feeling today, battling with reduction of Prednesolone and cant get the brand I normally do and the one I have been given is making me feel so unwell......be kind to yourself and rest...... that works. Xx
I feel you 🫂
I'm sure you've tried many different things to help with the fatigue, but have you tried hyperbaric oxygen therapy?
I have been going for six months now and have noticed a MASSIVE change in my energy levels ⚡.
Please research and talk to your doctors, even though they won't know the first thing about it, lol.
For the first month or so, you want to be going 3 to 5 times per week. After that, you can start going less often. It's just trial and error to see what works for you.
Try to find a local charity-based chamber. The one I go to is an MS therapy chamber, but only around 10% have MS. The rest have long COVID-19, ME, and other autoimmune conditions. It's only £100 per month, and that covers all of my sessions 👍
I really hope it gives you some relief 🙏
Dearest IsleofWight1
Thank you for being completely transparent about how you feel.
There are days and sometimes weeks when Lupus gets the better of us and it feels like an ongoing battle.
When that happens to me there’s only rest and easy activities which helps and I’ve accepted that. I also have a few days of what I call “wallowing” where I feel all the things you’re describing.
However I feel that my “wallowing” paves the way for slowly feeling physically and mentally able to cope again. Feeling bad and drained of your resilience is part of the Lupus cycle.
The best you can do is give your batteries time to charge up again and see how you feel then. Talking therapies help.
You are remarkably strong for being able to write about exactly how you feel.
Take time for yourself and try not to use your personal resources on things other than on you.
Sending huge virtual hug.
Gentle hugs to you IoW 🤗🤗🤗Firstly I'd like to say well done for posting. It takes a very strong person to reach out when they are struggling so I'm confident that you will work through this.
I think that every one of us here totally understand and can empathise with what you are going through. We all have to grieve for the old us..the person we once were before Lupus threw a spanner in the works. There are five recognised stages of grief Denial, Anger, Bargaining, Depression and finally Acceptance. If you Google you'll find out more about the five stages. Grief can be anything..it may be a loved one, a pet, a house, a much loved car etc so I'm not surprised that we all have to grieve for our old selves..who we used to be.
There's also a lot of fear. Worrying about the future..how much is lupus gonna take away from us. That is a constant with me and I often find that if I can stop what I'm doing and take some deep breaths..in through the nose and then gently blowing out through the mouth I can calm my anxious mind. I was diagnosed in 2017 and these feelings never really totally go away unfortunately but they can be managed with practice.
Another little exercise that I do when I feel overwhelmed is to go into nature with my worries and look for a suitable stone. I hold the stone in my hand and think about all the things that are worrying me at that time..putting my worries into the stone so to speak. I then take the stone to some running water..a river or the ocean is good (you have lots of beautiful ocean surrounding you). When I'm ready I thank the stone for taking away my worries and then throw it into the water as far away as you can. It really does help to take away the burdens/worries etc . This exercise also helps with anger. It's free of charge too!! Both of my daughters do this and just recently my eldest grandson has too.
One thing is guaranteed with Lupus..if you push yourself too hard you will make yourself feel worse. Your body is telling you that you need to adjust..listen to your body and rest when you must. Treat yourself as you would a dear friend or loved one who is ill. Be compassionate to yourself. Cry if you need to..punch some pillows..do whatever it takes to release those emotions and then you will find ways through it. This is why we are Lupus warriors 💜🌈xx
A very big thank you to every one of you that took the time to react to my post.
Some of you made me cry! But you all made me feel cared for and understood, which I realise is what I’ve been missing for a couple of years.
The physical side of our complaints, we can tell people about and they have an idea of what we are talking about, but those mere mortals don’t understand the fatigue and, what I’m discovering is quite common amongst us, the mental health strain it can lead to.
In your replies you’ve made me realise how I’ve been trying to address my physical changes but totally ignoring what it’s doing to my mental health. You’ve advised me to talk. Difficult , because I’m a ‘get on with it and stop moaning’ person. But, I'm going to chose a few trustworthy people and open up about how I really feel, , and try some talking therapies. I’ll try to find some outdoor pastimes that don’t involve so much physical activity . Most importantly you’ve told me to be kind to myself.. I look forward to trying that one too.
I really hope lots of others read this thread anDd get as much from it as I have.
Sending love, peace and good wishes to everyone.
hi from Godshill! Can’t offer much help as I feel the same despair!
At least you can get those cream meringues from The Old Smithy!
Best wishes to you.
😀
Look out a book, Thich Nhat Hahn, How to transform Pain and Suffering into Joy and Liberation. It teaches mindfulness and how to embrace your pain. It changed me. I just keep it by my bed and open at random pages on a bad day and somehow find an answer. Big hugs 🥰
I know I feel the same. I was diagnosed in 2022 . It's really debilitating, I couldn't get up yesterday and when I did I had to drag myself. Your body feels like it belongs to a different mind, A mind that isn't ready for this and wants to live more fun and actively and its so frustrating and sad. Sending you hugs and understanding 🤗 I'm so grateful of this platform so we can share our feelings with people who understand xx
I am so very sorry. I can empathise so much. Fatigue just sucks the joy out of your life. Struggling through is hard and we all do it but there are times when you have to accept it is time to rest and you simply cannot do anything. All of us, without exception have felt the frustration and despair of missing out on things we enjoy. I get tearful and angry because I cannot keep my house the way I used to. I get down when I am too fatigued to go out for a coffee with a friend when I have been stuck in for weeks. For everyone it is different but we all truly understand your feelings..
As Tiggywoos says just be kind to yourself. You have probably done too much for too long. Huge Cwtches xxx
sending love and hugs
I feel your pain!! I’m so sorry it’s so hard at times. Brief windows of respite are what keep me going. Sometimes I think it’s good just to vent! I hope better days are around the corner…
I am sorry you are feeling so poorly and thank you for the courage of triggering these exchanges. You have expressed what so many of us feel, yet more often than not agonise alone and in silence.
Having been diagnosed at the end of 2022, I too am still grieving my old active, sharp and reliable old self. In my case the frustration comes mainly from the brain fog and constant health complications triggered by trivial conditions.
This forum has been a life-line for me. It helps me not to feel alone in this battle, guides me on what’s to come and encourages me to find alternatives to cope with our predicament.
About a year ago I was extremely down; depressed and confused about myself: could I be saved? Could I fight for my self? Or did the person I once was died in that hospital? I still don’t know the answer to be honest, but at the time as if by destiny (mind you, I am quite down to earth not spiritual at all) coming from our walk my dog insisted on pulling me into the local bookshop. I obliged. There I bumped into a book; it was there on the table, a single copy misplaced among totally unrelated books. I started to read it, I felt so related to the author, the moment that ill health changes your life, changes you… when I realised I had read the first chapter then and there. The book is title Wintering: the power of rest and retreat in difficult times by Katherine May. I have never seen this book again in the bookshop, but it landed on my hand in the right moment. It helped me tremendously processing what had just happened to me, and to restore hope and resilience. I hope you also find your Wintering equivalent…
Big virtual hug to you and all of you who shared your experience and thoughts.
What a lovely post. Thank you for taking the time and effort to share your very warming story.
Since writing my post I’ve realised the importance of this group and just how valuable it is for so many people, including me now. It is only like this because of all of us, readers, writers, responders , or listeners. Thank you
New to all this....Advice?
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I can’t believe what I just saw
Life is hard but I am harder :P
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