It sounds depressing I know, I’m not depressed ! I’m just trapped inside this body that is failing me daily.
The world around me is full of happy faces, happy families and then there’s me. Most days I’m in a trance due to fatigue, most days I have no energy to smile, most days I feel like I’m looking at the world around me but I’m not apart of it!!!!! It’s almost like a fish in a fish bowl, I have the necessities to survive in my bowl while everything outside has their necessities and more! Everyday I swim, but there’s no way out of this bowl.
Very deep thinking, but it’s just been another one of those days, people can see my struggles but they carry on with their happy lives and just leave me in my bowl!!!!!
This body of mine sucks big time. Sorry for my negative thinking xxx
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Lisalou19
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This is how I’ve been feeling today, I guess we’re in the bowl together. And I’ve heard some nasty comments from a family member and really feel useless right now. It is hard to get out of that negative mindset, but I’m sending my love and hugs to you, we’ve got to keep going 💜
I get the feeling people think I’m rude, but some days I just can’t tolerate conversation, my brain just doesn’t process anything. I hope today is a better day for you 😘xx
It is difficult to describe isn’t it, I just switch off and seem dazed. I hope today is better for you too 😚💜
This is a very sad but apt metaphor Lisalou. Here’s hoping you soon are set free to live fully again like Wanda.
I think most of the population who don’t have chronic illness grow weary of us not getting better or actually getting worse. Are you on any of the Tricyclics for pain at all? I’m newly on one after years of taking nothing - at lowest dose. It’s called Imipramine and it is helping me sleep and I’m waking in less pain - both of which make me marginally more like the fish in the lake than in the bowl. I hate taking drugs but sometimes they help. Xx
Sleep is getting the better of me for sure. I was put on a new medication on Monday that should help with sleep whilst I wait for CBT therapy on the NHS. I feel like I’m so dependent on sleep aids.
I started hydrocloraquine (can’t spell it) at the beginning of January. So far no improvement and I sense from those around me that they are just rolling their eyes at me. Still I remain positive that they will eventually work.
I do take co codamal for pain, which works but of course this doesn’t have any impact on my trance state 😔. I know I seem negative but I really am trying so hard to start each day with a positive mind. X
I think we all go through cycles of intense negativity Lisalou. But it’s important to remember that only we as individuals can find our own way through and out of the bowl and it’s not just about physical pain. Counselling (not CBT) helped me a lot because, prior to the sudden onset of RA/ Sjögren’s pain, I’d lost both parents suddenly and prematurely within a few years of each other.
I’d never really made the connection with my formative relationships with my parents or others until the counselling - or realised that I’d always been unwell and in pain from childhood onwards. If it’s all you know then it’s all you expect and you adapt without even being aware of this.
For a while, on RA/ Lupus drugs I felt sick but I lost weight and fought the diseases (long-standing Hypothyroid) through diet and exercise. I think I did rather well and even quite enjoyed telling friends that this was due to me stabbing my belly each week with Methotrexate and taking a malaria drug! I volunteered for NRAS, threw myself into other volunteering and reading about what was happening. My healthy friends and family got bored or me being introspective and preoccupied with trying to help others whom I didn’t even know. They felt ignored and discarded.
But then, after severe intolerances to four of the modifying drugs I crashed and was back in the glass bowl, knowing I didn’t have RA but stuck with this diagnosis. Often in a hospital bed with new doctors doubting RA too.
We relocated and this gave me new focus and plenty non health worries. I carried on coming home for the odd counselling session and moved from area to area with hubby dragging me along and doing most of the heavy work himself.
Finally I got definitively rediagnosed with Sjögren’s - a much less known and more despised quantity and went back into my bowl. Socially I’ve been there ever since due to fatigue and being unable to achieve much physically anymore.
But the thing that keeps me going psychologically is creativity of one sought or another. I realise I’m lucky to have this plus a very dark, self deprecating or withering sense of humour in my armoury - and these two things keep me grounded when all else fails. I’m not on any drugs for my overactive immune system anymore.
Maybe you need to dig deep and locate certain qualities you feel you’ve lost with the help of counselling as I did?
We with invisible diseases get gaslit by doctors/ medical professionals, family and friends without them or us even acknowledging this. There are many articles (today’s Guardian has a great one for example) about this in the context of coercive relationships - but still no one writes much about it much in the context of chronic illness.
For me, this subject and my awareness of it has got me out of the goldfish bowl quite a lot. Regular days out and into the river in fact. Never nights out though - shame - but hey there’s lots on tv or radio.
Read the Guardian article “Abuse prevention and how to make sense of the gaslighters” and see if it makes as much sense to you as it makes to me. It’s not Sjögren’s that keeps me in the bowl sometimes - it’s the feeling of not being believed. This has become my cause or focus now and it has meant I’ve made some amazing new friends and have a new incentive to keep working along with some of the old reasons. Xx
Beautifully read. I did go through counselling during my journey and recognised that my relationship with my parents is no where near the relationship I have with my children. I suspect I’ve learned to be a better parent because I know how it feels to struggle and I know what pain feels like without having a physical injury. The times I’ve cried to my parents just to be told it’s just a bad day. Only recently my mum has started coming to hospital appointments with me, I think she thought it was all in my head, so I know I have anger towards her.
I know what drags me into a bad place, and that’s not being able to do what I want to do with my children. I can’t drive for long periods and I can’t climb tress or run after my son and just generally do normal stuff and that hurts my heart.
I know I need to keep focused and remain positive, it would be easier if those around me who are “well” would offer abit more help.
I’m also very familiar with the term “gaslighting”. Due to a previous abusive relationship and yes I’ve also experienced this from medical professional. Maybe when I get this new referral for counselling I can start to accept this illness and accept others lack of help.
I’m currently not taking steroids and this is causing me to have fewer better days which makes life pretty tough. X
Well I hope counselling helps. As someone who lost both parents suddenly and prematurely i would recommend you try and find ways to let things go with yours if you possibly can.
Re kids - I never ran after mine or climbed trees with them. But it helped living on a windswept island without any extended family to expect things of or trees to climb! X
I know exactly how you feel. It's as if our lives are getting smaller and smaller. All we can do is try to stay positive and take each day as it comes.
I hope you are blessed with a good day today. I hate myself for letting this get the better of me but sometimes we have to experience a low to get the strength to pick us up. X
You too. Don't hate yourself it's the illness that is horrible not you. It gets the better of us all at times. I just try to do something small each day that is just for me, little things make all the difference. Someone told me once ' all will be OK in the end, if it's not OK now it's cos it's not the end.
Never, ever apologise for the way you’re feeling Lisalou19 - I think we can all honestly say we have felt that exact same way at one time or another because of one thing or another.
I tend to feel the same when I sEE all of my former friends (who dropped off of the earth once I became a full time carer for Mum and got ill myself) on Instagram living their best lives - having children, going on holiday, buying houses, going out and having fun. Whilst I’m sat in bed for the sixth day in a row because of a flare up, looking in on their lives. I tend to try not to look at my local feed now and look at what other people are doing and find the wonder in it. If it weren’t for other people photographing beautiful white sandy beaches, I wouldn’t see them. Or a walk in the forest, it makes me feel as if I’m there. Sometimes you just have to take a spin on your new world and understand that you didn’t do this to yourself, nor do we want it to be happening. But it IS happening and to make the very best of it that we can, much like posting on here in times of need, as you have.
You sound very much like me, I don’t use social media because I realised it was getting me down seeing others enjoying life. This is my social media, health unlocked. I don’t find it easy reading others struggles, it does really upset me but it allows me to realise that what I am going through is my reality and not I am not alone. Xx
Another thought provoking stream of thoughtful, caring & moving words that I needed to read too.... 💝 thanks.
I try to look at my life as a journey that teaches me regularly & there are days I cannot see what I need to learn & how to step back from an emotional rollarcoaster to feel more grounded. I learned alot from my family especially my daughter, as I knew she was like a sponge & needed to learn how to cope in life too... Found/sought some good teachers (both near & far) & brought the lessons home to share .... it helped all of us in our life journey.... Still learning..
Hoping the hydroxy works soon... sometimes your body may need more meds or different meds to help you (not that I want to be dependent on them).... I just have enough energy to push gradually at my stamina & then days not.... I too would like so much to swim in the sea (literally) my goal this August.... 🌊🏄 I will be the one covered head to toe in wetsuit, gloves, shoes....😊..... Hug ML
I think quite a few of us can relate, and are swimming in circles with you!
I am only recently diagnosed, but I have come to realise that with the relief of diagnosis comes an inevitable grieving period for the lost future of not only myself but my little family. My husband has the burden of me, my children are going to miss out on summers at the beach and socialising likely comes at a cost of being bedridden for possibly days... These are not small things!
Your reply made me cry. I am so sorry you got this at all but that your kids are still young enough to enjoy you is particularly cruel. Mine hit when I was 48 so my daughter was an older teenager who became my carer with never a word of complaint, angel that she is. Try to rejig your thoughts on what makes your kids happy and none of it is as good as just you being with them. Painting is good, my mum had a button box full of bits of broken costume jewellery, odd buttons, etc, get out the glue and start making stuff. Kids do love that and with our weather, indoors can be just as good. Have a picnic at home with hot chocolate and marshmallows (bung it in the m/wave) instead of cold fizzy stuff, eat sandwiches off a blanket under the table and your kids will be entranced. Because it's you, mum, that makes everything magical. Get their dad to do all the running about, they won't love you any less. Also children are very sympathetic naturally.
I wish you luck and hope you feel better; when we say we have ALL been there, we mean it. It's perfectly normal to grieve for what you feel you have lost but not every day will be as bad, it really won't and you will be ok. Your husband and kids have your back, really, that's all you need. People are just immune (pardon the pun) to invisible illness, they like to see the illness, that's just human nature, it doesn't mean you are not believed, though I grant you, it may feel that way.
All the best sweetheart and we are here all the time, vent away, at length, in depth and with foul language as appropriate! Cos we've all been there too. Gentle hug so as not to hurt...take care. x Dawn (who today is up!)
Thank you Dawn, that it lovely. It's not that I'm worried about my children having an awful childhood, it is just that summers at the beach are a bit of an Australian institution, and my kids aren't going to get to be part of that. Also, every decision I make about their activities now includes weighing up how much uv exposure I will get. I am very lucky as I have a wonderful husband. Hugs back, enjoy your good day!! Xx
Awwwww Lisalou..sending u a gentle cyber hug lovely 🤗🤗xx
Children are very resilient n I'm sure that your little boy is happy in many other ways..he's good company n maybe he doesn't want to climb trees!! Other people look happy but how do u know that? They seem happy to u because u feel sad right now..that's all.
I have recently read Keeping Sane in Pain by Karen Drennan-McEwan..I got it on Amazon £12..worth every penny!! There are so many 'eureka' moments..she is spot on!! She has lupus herself n this book is partly the story of her own journey with lupus but she's also a psychotherapist n gives loads of tips on how to manage ourselves both physically n emotionally..for instance research has been done on the effects of chronic pain on our brains which directly affects our moods!! I highly recommend it because it's easy to read n understand.
Today I'm gonna give the bowl a miss coz it seems pretty busy in there at the mo!! I'm the same as u..no social media for me coz all I need is right here on this wonderful forum!! The great thing about it is that we don't have to actually speak or meet up but we can get things off the chest anytime..day or night..the wonders of the web eh? We're all holding hands n helping each other along...now that makes me happy!!! Xx
Speaking to someone can help boost your mood and reduce any stress/anxiety you may have :). If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. Our Contacts mostly have lupus themselves and are there to act as listening ear - providing support and understanding. If you would like a contact to speak to, please email me at chanpreet@lupusuk.org.uk or send me a private message.
I can and do relate with you, it is so hard to"keep positive" other people's favourite saying even the gp! I feel also everyone has a love life, a social life basically a life... And not me and it sucks. When I feel well I want to do things but find I have noone to do them with !😟how did this happen I ask myself?? I used to have friends, date etc etc. People say"it could be worse" and on a bad day I want to reply. "how"??!! 🤬Nevertheless we soldier on hoping tomorrow will be better. I (and most people with lupus I know) truly empathise. The only way to deal with it is, i have found, to 1) accept your limitations 2) try to find things you can manage to do that make you feel good 3) be nice to yourself and seek out those who are nice to you!!!
I hope tomorrow is brighter for everyone. Night xx
Yes my social circle is non existant. I know for some they just got fed up asking me out and for others they are just not bothered. I’ve been single for 5 years, as for dates I just feel so rubbish in myself I can’t do it! Which I guess means I will be single forever 😐
I know my weight gain from steroids is really dragging me down so I need to focus on this firstly
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