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"Thank you for this and sorry for what you're dealing with. I have ME and a genetic connective tissue disorder. Even doctors are dismissive and tell me it's in my head. My ex husband treated me horribly too, refusing to believe my limitations were genuine, saying it wasn't a real illness, that I used it to get what I wanted etc. He even called me a selfish bad mother, even though I was pushing myself to the point of collapse. It's a hard road to walk. I'm very fortunate now to have a kind and understanding partner who would never pressure me to do something I can't manage, or tell me I'm using my illness as an excuse! (Moonwitch)" Hi Moonwitch, thanks for the reply, I'm glad to hear you've a supportive partner- must make a huge difference especially when its sounds like its been so isolating for you. I hope you have a restful weekend. | |||
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"If a condition can't be seen people don't believe it exists. " How sad but very true.  | |||
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"If a condition can't be seen people don't believe it exists. " Yes, totally, I am lucky in some respects that my condition is recognised and there is some specialist support, can't imagine how difficult it must be to not have at least some recognition, I hope you are keeping well. | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life." I totally get that mantra, its rubbish for you too though, you're no less important. | |||
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"If a condition can't be seen people don't believe it exists. How sad but very true. "Isn't it. Mr N has chronic, debilitating back pain which affects his quality of life. Very few understand chronic pain if they haven't experienced it and can never believe that it's as bad as you say. People say things like " oh I had a bad back once have you tried paracetamol/yoga/pilates/physio/sitting up straight/witchcraft/all manner of alternative medicine ?" when you tell them. | |||
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"If a condition can't be seen people don't believe it exists. Yes, totally, I am lucky in some respects that my condition is recognised and there is some specialist support, can't imagine how difficult it must be to not have at least some recognition, I hope you are keeping well." I'm as for as a fiddle thank you | |||
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"If a condition can't be seen people don't believe it exists. " I experience this from many....I have severe osteoarthritis all over which started in my mid 20s (have had so many operations over the years) plus Fibromyalgia. People see me being active,bit of a party girl etc, as I can manage with medication & regular exercise, in the main, but are dismissive or disbelieving in when I say there are flare up/pain episodes when I literally cannot move or get out of bed. But it's a "them" problem, not a "me" For me, the pain is real | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life." I was diagnosed with sarcoidosis around 15yrs ago didn’t know how long I had been suffering with it (maybe years) my Gp diagnosed it quite by chance when I showed Him a rash/sores on my shins (erythema) I had been suffering with my lungs and terrible joint pain to the point I couldn’t walk, also inflamed eyes, it went into remission but, I’m really suffering again now, but my Gp retired, and now they say I haven’t got it and all my symptoms are separate illnesses, they are saying my joint pain and fatigue is fibromyalgia, eyes are blepharitis it’s just so frustrating I’m really struggling day to day, May I suggest contacting Sarcoidosis uk, they have been most helpful they do a series of booklets relating to various symptoms and also do one that explains the illness to an Employer to raise awareness, they also Hold help groups around the country and web Q and A sessions, | |||
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"The filthy looks when parking in a disabled bay, they even check the badge "Yes we get that all the time | |||
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"We both have chronic conditions but like others say as they can't be seen people don't always believe it " It’s can be quite unpleasant to deal with too, not personally, but I’ve seen how some people at work or just socially are treated. In the same way people also tend to minimise others health conditions, or have some personal sliding scale of what they think is worthy of consideration | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life. I was diagnosed with sarcoidosis around 15yrs ago didn’t know how long I had been suffering with it (maybe years) my Gp diagnosed it quite by chance when I showed Him a rash/sores on my shins (erythema) I had been suffering with my lungs and terrible joint pain to the point I couldn’t walk, also inflamed eyes, it went into remission but, I’m really suffering again now, but my Gp retired, and now they say I haven’t got it and all my symptoms are separate illnesses, they are saying my joint pain and fatigue is fibromyalgia, eyes are blepharitis it’s just so frustrating I’m really struggling day to day, May I suggest contacting Sarcoidosis uk, they have been most helpful they do a series of booklets relating to various symptoms and also do one that explains the illness to an Employer to raise awareness, they also Hold help groups around the country and web Q and A sessions, " Thank you, I've been meaning to contact them, good to hear from someone who's spoken with them. It's incredibly frustrating talking to GPs etc when you can see that you've fallen into the too difficult/don't believe you basket  | |||
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"The filthy looks when parking in a disabled bay, they even check the badge "Get this quote often, blue badge for the PTSD. Ive used it twice. Both times got foul looks off people and then lead to futher confrontations, including being called a "pussy" because i had a little rough time. I just dont use it now and hope for the best. My car is a safe space for me, I have a passion for keeping it immaculate and well maintained, so its a place I go that creates a neutral calm environment, so if im in a shop and something triggers me, I know go to my car, which is often furthest end of the car park now so it doesnt get damaged. | |||
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"Thank you so much for this post and thread! I have cfs and fibromyalgia and I'm honestly struggling. The isolation, being treated and taken seriously by medical professionals, and of course, the debilitating conditions that I have. Not to mention all the unsolicited advice! Relationships have suffered, my working life has been put on hold, and friendships are disappearing fast. It's a very lonely and frustrating existence at the moment. G." As a fellow sufferer, I very much hear you. | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life. I was diagnosed with sarcoidosis around 15yrs ago didn’t know how long I had been suffering with it (maybe years) my Gp diagnosed it quite by chance when I showed Him a rash/sores on my shins (erythema) I had been suffering with my lungs and terrible joint pain to the point I couldn’t walk, also inflamed eyes, it went into remission but, I’m really suffering again now, but my Gp retired, and now they say I haven’t got it and all my symptoms are separate illnesses, they are saying my joint pain and fatigue is fibromyalgia, eyes are blepharitis it’s just so frustrating I’m really struggling day to day, May I suggest contacting Sarcoidosis uk, they have been most helpful they do a series of booklets relating to various symptoms and also do one that explains the illness to an Employer to raise awareness, they also Hold help groups around the country and web Q and A sessions, Thank you, I've been meaning to contact them, good to hear from someone who's spoken with them. It's incredibly frustrating talking to GPs etc when you can see that you've fallen into the too difficult/don't believe you basket "terrible attitude from my Gp he said to me “you had sarcoidosis once but it’s gone now and don’t come back”, horrible not being listened to , was a relief when I was told what was wrong with me, but it’s a nightmare | |||
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"I love being told I dont look ill... or that my conditions are in my head or made up. Mostly I live with the pain and exhaustion but sometimes I just have to concede... " I live with epilepsy so Can sympathise with your problems as many times I get told “there is nothing wrong with you” “The things you will do to get attention “ etc. Take care sweetheart Im in the trenches next to you xxx | |||
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"The filthy looks when parking in a disabled bay, they even check the badge "So sorry! I take public transportation and when I'm not well I sit with my sunflower badge so far no one had given me a dirty look....unless I don't notice it due to the autism. I did have a guard stop me to look at my Disability Freedom pass...maybe they thought I had st0len it..but that was pre-covid...So many people have long covid and aggravated mental conditions that it's now common to have the hidden disability sunflower badge. I had a kid pull mine but I already saw that they were wearing one too. So I thought oh they are just curious because they are like me...hidden condition. Unfortunately, work has been different. Managers think I'm malingering or something so I stopped working and am taking them to Tribunal. | |||
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"If a condition can't be seen people don't believe it exists. How sad but very true.
Isn't it.
Mr N has chronic, debilitating back pain which affects his quality of life. Very few understand chronic pain if they haven't experienced it and can never believe that it's as bad as you say.
People say things like
" oh I had a bad back once have you tried paracetamol/yoga/pilates/physio/sitting up straight/witchcraft/all manner of alternative medicine ?" when you tell them. "Lol! @witchcraft. I swear back pain is the worse pain I've had...physically. Mentally, meltdowns, brief psychotic episodes and anhedonia & apathy for months on end. Women will talk about how shit perimenopause and menopause are and all the other hormonal and gynaecological conditions we have to suffer in silence. | |||
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"Following this forum Earlier this year diagnosed with Polymyalgia rheumatica,steroid induced diabetes,chronic diarrhea for 3 months lost 12kg now had to stop work now in middle of major depressive disorder had ct scans,possible colon issues,all clear,now investigating nodule on absolated thyroid " hugs. I've had to stop work too and having group activities in the alternative sexual community is probably the only thing stopping me from spiralling into a deep depression. I have compersion so even if I'm not playing with anyone, just seeing people enjoy themselves while I forget about everything I'm going through for a bit, makes me feel better. | |||
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"Not as chronic as some but underactive thyroid paired with obstructive sleep apnea results in some excessive tiredness and muscle aches. Managed with meds and treatment but some days are a struggle to manage. Had friends not understand and tell me to go to bed early or have a nap....." Cringe at so-called friends. next time take the mask if you have a machine and tell them try sleeping with that on. I have terrible fatigue to the point of being f.ing dangerous. I forget safety stuff and I've fallen over. My brain and body check out and I can't move. All I can do is pace and make sure I'm in a safe place. | |||
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"Back problem yet all the women at work look at me to lift the heavy stuff. "How rude! I used to work in a supermarket lifting heavy stuff. I would never ask my colleagues with smaller bodies and health conditions to lift anything heavy. Unfortunately, I've come to the end of my ability to push or pull the heavy cages and the stress of that pushed my mental health as well as the autistic meltdown over the edge last year, and I haven't worked since. I have to change my whole lifestyle...yet again....and the DWP isn't interested in helping find another job...Messes with my self-esteem if people think I'm unemployable. Always put your health first and if necessary, like I'm hoping to do work from home with a standing desk and walking pad or/and become self-employed. People take the mick out of influencers but a lot of them have chronic hidden conditions and still have bills to pay! | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life. I totally get that mantra, its rubbish for you too though, you're no less important. " I go with "focus on what I can do not what I can't do." Luckily I can still have sex. Lol! And that cheers me right up. lol! But on a serious note, I'm still grateful to have made it this far in life. I've known too many people who were gone before reaching my age. Absolute shock to the system when you ( me the clusterfuck is) are standing or sitting there with their parents and they are gone. | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life. I was diagnosed with sarcoidosis around 15yrs ago didn’t know how long I had been suffering with it (maybe years) my Gp diagnosed it quite by chance when I showed Him a rash/sores on my shins (erythema) I had been suffering with my lungs and terrible joint pain to the point I couldn’t walk, also inflamed eyes, it went into remission but, I’m really suffering again now, but my Gp retired, and now they say I haven’t got it and all my symptoms are separate illnesses, they are saying my joint pain and fatigue is fibromyalgia, eyes are blepharitis it’s just so frustrating I’m really struggling day to day, May I suggest contacting Sarcoidosis uk, they have been most helpful they do a series of booklets relating to various symptoms and also do one that explains the illness to an Employer to raise awareness, they also Hold help groups around the country and web Q and A sessions, " Hugs...yeah I've had the run around with the GPs too. My last employer/line manager couldn't give a fuck. | |||
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"Interesting thread,. Multiple Sclerosis and Oestoporosis, I can look very healthy, I rarely look unhealthy.. I am in bed and not going out so people very rarely see me ill. If they ask how I am the answer is I am good ( I must be I am out!) Happy to chat here or in private " It's my mental health and whatever this awful fatigue is that keeps me in. I was like if the DWP did surveillance on me all they would see is that I go to the pub ( I live next door to one, they have my door keys), exercise ( work when I used to work) and home the majority of the time. People asked me out this week for kink/swinger stuff and I just haven't got the energy for it! Told them to take their other partners. Lol! I think the last time I was dancing was bank holiday weekend. I went to Torture Garden last weekend for my birthday and I had to drink energy drinks, stay in bed the whole 8 hours before and after . Then when I was there even though it's a nightclub I sat down for most of the night. Definitely had to take the stairs, holding on for dear life going up and coming down slowly. Some people had to tackle them sideways. Some people just stayed on the ground floor. And I was not the only person sitting down for most of the night for sure!! Young or middle-aged or senior age. girlies took their shoes off at the end of the night. lol! I put my granny shoes with orthotics back on. Lol! | |||
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"I'm no longer able to hide mine. It's showing on my face and gait. " Well I do dress crazy sometimes and hobble around sometimes. lol! But when I dress normal and my hip isn't acting up, I look like I have zero health conditions. Sigh. | |||
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"Mine shows only that I have lost lots of weight/muscle condition approx 35kg" Hugs. My meds made me put on weight and because I'm fight to have the energy now to execrise and cook healthy meals its stuck probably 35kg overweight BMI. Because I've had disorderd eating.....I've gone the other way too being underweight....No one says anything because they think thin is in. Sigh. | |||
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"Thank you so much for this post and thread! I have cfs and fibromyalgia and I'm honestly struggling. The isolation, being treated and taken seriously by medical professionals, and of course, the debilitating conditions that I have. Not to mention all the unsolicited advice! Relationships have suffered, my working life has been put on hold, and friendships are disappearing fast. It's a very lonely and frustrating existence at the moment. G." i'm there with the chronic fatigue...no syndrome assessed yet. Work made me have a mental meltdown. DWP won't or can't help me find suitable work. NHS can't do anything and keep cancelling my appointment to chronic fatigue clinic. On the plus side, All my friends and associates are now people like me! Neurodivergent and struggling with long term health conditions. Lol! oh and most are middle-aged too. I use pacing so I can still go out and I do low-exertion activities. Honeslty if I didn't get PIP I would go nowhere, so I use my PIP to pay for taxis and activities to stop me spiralling into depression and being a shut-in and losing my sanity and my mobility. Sometimes friends and playmates pick me up and drop me off or split the cab fare. yeah I don't drive...meds, driving anxiety in London, current brain fog and glitches and fatigue..not safe for me to drive. I do cycle when I feel well enough....I have forgotten to buckle my helmet but at least I'm unlikely to harm someone with my helmet.   | |||
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"Asthma. It ain't easy being wheezy "Asthma is scary. I had a classmate died from an attack when I was 13. Classmate who would get triggered from cut grass adn dust in the atmosphere. A uni mate died from it when were 20/21 I was worried my friends who have athsma were going to die or become disabled from Covid. I sit in a mental health support group and I basically freeze in fear when one of our members starts wheezing and get the inhaler out. I know it can be managed and you can live a long life with it but for me maybe it's a trigger based on my past experiences. Hugs and deep clear breaths. For us both. Stops my anxiety attacks. | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life. I was diagnosed with sarcoidosis around 15yrs ago didn’t know how long I had been suffering with it (maybe years) my Gp diagnosed it quite by chance when I showed Him a rash/sores on my shins (erythema) I had been suffering with my lungs and terrible joint pain to the point I couldn’t walk, also inflamed eyes, it went into remission but, I’m really suffering again now, but my Gp retired, and now they say I haven’t got it and all my symptoms are separate illnesses, they are saying my joint pain and fatigue is fibromyalgia, eyes are blepharitis it’s just so frustrating I’m really struggling day to day, May I suggest contacting Sarcoidosis uk, they have been most helpful they do a series of booklets relating to various symptoms and also do one that explains the illness to an Employer to raise awareness, they also Hold help groups around the country and web Q and A sessions, Thank you, I've been meaning to contact them, good to hear from someone who's spoken with them. It's incredibly frustrating talking to GPs etc when you can see that you've fallen into the too difficult/don't believe you basket "Hi Fallen into the Complex Needs mental health team. GPs are terrified. Talking Therapies/ IAPT and the community mental health team won't touch me with a barge pole. Lol! Crisis team...only when in crisis. zero help with the day to day why am I alive? what is this shit ?( 5 apps to go to Torture Garden anxiety) and why can I not move or stay awake episodes. Fun Fun....not. I avoid the GP now but because I'm crazy...sometimes the crazy slips out and the....other authorities ( Tenancy Engagement officer this time) contact the GP and they CONTACT me to "discuss" my mental health. I've been hiding from my social worker for months because she doesn't do any practical help or mental health support, she just gives me anxiety. Lol! Tenancy officer has been helpful but she's younger and full of beans. Lol! and help me make heads and tails of all these damned apps!! Oh wait there's an app to see my GP now too....smh.. Well as long as you are still breathing and awake might as well keep going.  | |||
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"Both of us have our problems. I have mild Cerebral palsy and joint problems so when Winter hits I can be in a lot of pain, also on the Autistic Spectrum aswell. VelvetPanda on the other hand is Type 1 diabetic which as say quotes is a 'Ballache' as it teamed with food allergies. Both of us also suffer with our mental health with Bi polar and S.A.D (seasonal affective disorder). " Yes and Winter SAD season is now upon us..ffs....so now I feel the depression creeping, Autistic me is mad at have to wear 6 layers again and my middle-aged hip hurts from the cold. Nudist sauna here I come!! | |||
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"I was diagnosed with Ankylosing Spondylitis around 15yrs ago, used to suffer really badly with fatigue, some days it could take me 30mins+ to get out of bed and get a pair of socks on, I’d fall asleep pretty much anywhere (even at Silverstone during the 2009 F1), people never understood and though I was just being lazy.. It wasn’t until I was diagnosed that even those closest to me were sympathetic.. In extreme cases the condition is often referred to as bamboo spine, as a result of spinal fusion, I have slight curvature but fortunately no sign of fusion so far.. I was prescribed/popping Diclofenac and Naproxen like Smarties in order to get by.. After numerous x-rays, ultrasounds, ct scans, blood tests etc I was finally placed on fortnightly biologic injections, to say they’ve been life changing is a massive understatement, I still have the occasional flare up from time to time at which point a supplementary Naproxen or two usually sorts it, but apart from carrying a few extra lbs that I can’t seem to shift, I’m a relatively healthy 40 something.. As has been said by another poster, I live by the motto that there’s always someone worse off than me.. Hidden illnesses/disabilities suck 🙁!! " Glad you got some relief. Although I often get annoyed at the NHS, I eventually did get the intensive mental health treatment that I needed to stop doing things to hurt myself and pinpointed the autism and the trauma that no one else picked up for 20 years. So I just make the best with what I've got/can do. My younger years have been much better than my older years, despite being undiagnosed so hopefully you can make up for lost time ( travel more, go out more)while I'm resting from being on a 20-year treadmill of torturing my mind and body. | |||
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"The filthy looks when parking in a disabled bay, they even check the badge
Get this quote often, blue badge for the PTSD. Ive used it twice. Both times got foul looks off people and then lead to futher confrontations, including being called a "pussy" because i had a little rough time.
I just dont use it now and hope for the best. My car is a safe space for me, I have a passion for keeping it immaculate and well maintained, so its a place I go that creates a neutral calm environment, so if im in a shop and something triggers me, I know go to my car, which is often furthest end of the car park now so it doesnt get damaged."Aww bless you hear with the car. I have childhood trauma but unfortunately it affects me in a way that I should NOT be driving in London. I sit in a support group with plenty of ex Military and some don't leave the house unless absolutely necessary. Groceries and meds are delivered and Fireworks mean a night in the bathtub with pillows and earplugs. If I'm out and feeling faint, I wear my disability pass so I can sit on the bus or train or if it gets really bad I will sit on the floor and put my body in the recovery position if I have to. Some days I have to take taxis. On very good days, I cycle. | |||
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"Fibromyalgia here, D is my absolute rock in removing elements I struggle with, looking after and keeping two kid's as quiet as possible so I get rest as I can, ensuring I've taken my meds and totally putting my pleasure over his when we're being naughty.. So many times I've had many orgasms and are done physically and he doesn't 'finish' never a complaint and christ I feel guilty of the fact often.. 😞😘" So glad you have that support...and can still get sexy together. I'm polyamorous because being a carer for my mental health is exhausting for one person. We won't talk about the physical problems I've started to have at 40. It's a relief when I can just say I need to rest but here are some other lovely ladies, you can shag while I be a voyeuristic perve. Lol! Some of my playmates have wives with conditions too so the wives get their rest and the husband gets intimacy! As a single person lack of intimacy is awful for most people but I can sort it out by myself. A lot of couples get stuck because one of them can't give intimacy and the other one is desperate for it. Marriage and relationships are not fantasies; people think they are. A lot of compromise, trust, communication, understanding and holding space and grace for people is needed. It sounds like you guys have those needed things in your relationship and that gives me all the happy feels/compersion.
Also pervy me thinks D deserves a sex doll toy as a Christmas present.
Autistic me thinks how will you hide it from the kids though. Lol! | |||
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"I have OH which only tends to become less hidden when I faint. " Orthostatic Hypotension? Hugs I often feel faint but I've put it down to my wonky brain disconnecting. On the kink/Fetish/BDSM side, we have a lot of fainters...Luckily, people catch them and put them in the recovery position... I can feel mine coming on so I tell people and my playmate has put me in the recovery position before. A lot of the people in the lifestyle/community/scence are doctors, nurses and paramedics so that makes me feel relieved and it's a bit of a joke when I show my emergency bondage rope scissors to the paramedic who is there to be off duty!!! | |||
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"Ive got a hidden illness or 2. I think we are all different. Respect and patience is in short supply these days" Yeah I looked up pacing when the GP referred me to chronic fatigue clinic. Have to stop rushing around now. Lol! | |||
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"Photosensitive Epilepsy, so have to be careful. No wonder people avoid me "Hugs. I sit in a NHS mental health support group with someone with epilepsy, and we don't avoid them at all. We all know to put them in the recovery position and they have had an episode in the support group many times before. We are a safe space for them every week to get out. | |||
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"Iv (Kat) had a life of medical problems from the age of 18 months. 25 + surgeries, more to come too. Stage 4 endometriosis, Crohn’s, inflammatory arthritis just to name a few. I’m a larger woman and always have been, but nothing I suffer with has anything to do with my weight, the medical community still seems to think losing weight and moving more will cure me of my incurable diseases. It can be incredibly lonely, very difficult to feel sexy.. however I have the sexdrive of a Randy teen. " As a straight woman, any man would be lucky to have your ass smother him to death. As a taller woman that's a kink for some men. We all know the BBW kink. One of my playmates' wives is tall and thick and omg good watching her fuck him has got to be the sexy thing ever! Yes he's into ass spanking. Heck I'm into ass spanking giving and receiving and I've got a fat ass too! The medical community think all my physical health conditions are in my head because I'm crazy. They also think because i'm fat, I should be more physically ill!! Me: my hip hurts and I struggle to walk Them: Well how is your mental health and your blood pressure? It's the invalidation that winds us up more than the actual condition(s)! | |||
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"I have Sarcoidosis, and an initial consultation with the neurologist on Tuesday. As a treat I also have an initial consultation with the haematology team on Friday as I've had a load of dvts, one while taking apixaban. It's genuinely exhausting, and to echo what others have said, if they can't see a missing leg or something, they assume you're fine! I just stick to my mantra that there's always someone worse off, and that I need to be thankful for the positives in my life. I was diagnosed with sarcoidosis around 15yrs ago didn’t know how long I had been suffering with it (maybe years) my Gp diagnosed it quite by chance when I showed Him a rash/sores on my shins (erythema) I had been suffering with my lungs and terrible joint pain to the point I couldn’t walk, also inflamed eyes, it went into remission but, I’m really suffering again now, but my Gp retired, and now they say I haven’t got it and all my symptoms are separate illnesses, they are saying my joint pain and fatigue is fibromyalgia, eyes are blepharitis it’s just so frustrating I’m really struggling day to day, May I suggest contacting Sarcoidosis uk, they have been most helpful they do a series of booklets relating to various symptoms and also do one that explains the illness to an Employer to raise awareness, they also Hold help groups around the country and web Q and A sessions, Thank you, I've been meaning to contact them, good to hear from someone who's spoken with them. It's incredibly frustrating talking to GPs etc when you can see that you've fallen into the too difficult/don't believe you basket terrible attitude from my Gp he said to me “you had sarcoidosis once but it’s gone now and don’t come back”, horrible not being listened to , was a relief when I was told what was wrong with me, but it’s a nightmare "That's now triggered my perimenopausal Karen rage. Me at your GP: I want to speak to a manager!! | |||
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"Have been chating with the London pain clinic about having Fibromyalgia, but need a full set of blood tests GP won't do them due to cost. So left in limbo till February when I'm off to India will get them done out there for about £150 have been quoted £1100 hear." If I had more time, energy and money, I would do that but I don't so I'm just putting up with the lack of diagnosis, treatment and support. Hope it works out. | |||
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"I have been deaf since the age of 4. People treat me as if I am stupid. Also while people are understanding of someone in a wheelchair, or is blind there is no consideration for the deaf. Even in here Im treated like my condition is contagious." Hugs. I was trapped in big supermarket autistic hell and I walked up to a worker probably talking too fast to ask where something was. They were deaf. Another autistic guilt moment for me. Luckily, they were calmer and less frazzled than me and asked me to repeat what I said and once I realised they were deaf, I made an effort to slow down my panicky speech as possible. And obviously thanked them, when they helped me. I used to work in a supermarket but a little one and I'd get overwhelmed there but I'd still try my best to help anyone disabled, especially if they disclosed it. We had 2 blind ladies come in regularly. One with a dog and one without. Some of my colleague were scared but I understood..also because I love dogs and use to work with a blind lady with a dog so she explained a lot to use about things when you can't see and also how the dog reacts in public. I also worked with people who are deaf. We help each other at work. Not management. Management were/are a pain in the ass. Lol! | |||
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"I suffer with mental illness, a broken spine and a heart condition... the hardest part is when I have a bad day with it all. I'm still alive and kicking though so that's a win" Hugs... I'm like I'm still alive so I might as well do what I can when I can and sod the rest. Lol! | |||
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"I love being told I dont look ill... or that my conditions are in my head or made up. Mostly I live with the pain and exhaustion but sometimes I just have to concede... " Mostly I avoid people who say things like that. Lol! They can go jump in a lake so I can then turn around and say well you don't look wet and cold. | |||
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"I love being told I dont look ill... or that my conditions are in my head or made up. Mostly I live with the pain and exhaustion but sometimes I just have to concede... I live with epilepsy so Can sympathise with your problems as many times I get told “there is nothing wrong with you” “The things you will do to get attention “ etc. Take care sweetheart Im in the trenches next to you xxx" Good God in Heaven. Please stay away from anyone who says you are attention-seeking. I often avoid Vanilla/Neurotypical/Textile people because of this. Kinky/Neurodivergent/ Naturist/nudist people seem understand vulnerability and health conditions far more I find. We've seen people faint from bondage or spanking. We've seen people go non-verbal from autistic shutdown or ADHD people stimming. We've seen people's scars and loose skin that's otherwise hidden by clothing. Other people sometimes have no experience and just assume and are cruel as fuck. I have to file them in my brain as ignorant and irrelevant and unimportant. Looks at my last line manager. | |||
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"Hidden illnesses and Diseases are very depressive and lonely!! I was a very active person and still am to a degree, as I will explain. I was diagnosed with Parkinson’s Disease (an aggressive form) after being involved in an incident, which used up all the Dopamine I had in my body. The lack of Dopamine was being masked by the high levels of adrenaline that I produced in doing extreme sports and activities and sex. I had had Parkinson’s for sometime and just shrugged it off as being an injury or getting old!!!!! I was in denial for a long time after being diagnosed and couldn’t talk about it, my libido was low and self esteem on the floor …… I’m a fighter and not usually a depressive person ….. Help from the Parkinson’s Society, the Parkinson’s Nursing Team and the local Hospice gave me the mental tools to fight back. The meds have taken a while to get right and stabilise the Disease and is a constant battle. Now I’m back doing my sports, not to the same level I did but able to adapt….. and importantly my libido is back and I am just as naughty as ever !! I get the thread and that people look at you in a different way and in some cases avoid you or comment …… is he d*unk or on drugs or faking it !!! My confidence is back and I confront those ignorant and mean people. …. Asking them why do they think I’m d*unk or on drugs or faking it ????? ……. They generally don’t say much more and my true friends that are left (now that’s another story) often jump in. Yes there are days my mate “Parky” wins and I struggle but I fight the bastard every day knowing I win battles …… I’m never going to win the war but I need and intend to make it a long one lol 😂 I’m extra popular at parties being a human cocktail shaker and Parkinson’s Disease means I can have a piss and wank at the same time. If you don’t laugh at times … what’s the point 😂 I get that a hidden illness can influence people’s perception of you and it’s the beauty inside you that matters, it is very easy to say and difficult at times but win the small battle and laugh …… luckily I’m of a character that doesn’t mind laughing at himself and confronting those that mock or belittle me. It’s hard living with a hidden disease and those that know are generally those that get on with life and don’t give in. Hope this resonates with those that know the true struggle of hidden illness’s Keep the faith XX" Hugs. I do know some older gentlemen who do some extreme sports but I've noticed the mind body connection is not always there. I have my own issues now with memory loss and brain glitches but I've been in mental health services a long time so I just roll with it mentally. Lol@ the human cocktail shaker. I also make weird autistic jokes about my conditions. We all do in our mental health support group. If we didn't laugh we would spend all out time crying and not focusing on what we can do. | |||
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"My injury was caused by the Covid-19 vaccine (astrazeneca). 2 blood clots left me paralysed for a while. On here with the help of injections. " Hugs. The whole Covid thing just ruined a lot. | |||
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"Photosensitive Epilepsy, so have to be careful. No wonder people avoid me
Hugs. I sit in a NHS mental health support group with someone with epilepsy, and we don't avoid them at all. We all know to put them in the recovery position and they have had an episode in the support group many times before.
We are a safe space for them every week to get out."Thankyou for that, nice to see someone who cares and understands. A rarity in my experience. Am ok in clubs ( just ) xx | |||
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"Chronic pancreatitis for me…which in turn led to type 3c diabetes and more recently fibromyalgia. What doesn’t kill you makes you stronger 💪💪💪" Feel you on them im excatly the same never known pain like pancreatitis honestly say its nearly as bad as giving birth i also have chronic lymphocyte leukemia to add to the rest | |||
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"Chronic pancreatitis for me…which in turn led to type 3c diabetes and more recently fibromyalgia. What doesn’t kill you makes you stronger 💪💪💪 Feel you on them im excatly the same never known pain like pancreatitis honestly say its nearly as bad as giving birth i also have chronic lymphocyte leukemia to add to the rest " It really is pain beyond belief 😢 | |||
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"Chronic pancreatitis for me…which in turn led to type 3c diabetes and more recently fibromyalgia. What doesn’t kill you makes you stronger 💪💪💪 Feel you on them im excatly the same never known pain like pancreatitis honestly say its nearly as bad as giving birth i also have chronic lymphocyte leukemia to add to the rest It really is pain beyond belief 😢" It totally is have several attacks a month even though I stick to low fat diet | |||
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"The filthy looks when parking in a disabled bay, they even check the badge
Get this quote often, blue badge for the PTSD. Ive used it twice. Both times got foul looks off people and then lead to futher confrontations, including being called a "pussy" because i had a little rough time.
I just dont use it now and hope for the best. My car is a safe space for me, I have a passion for keeping it immaculate and well maintained, so its a place I go that creates a neutral calm environment, so if im in a shop and something triggers me, I know go to my car, which is often furthest end of the car park now so it doesnt get damaged.
Aww bless you hear with the car.
I have childhood trauma but unfortunately it affects me in a way that I should NOT be driving in London.
I sit in a support group with plenty of ex Military and some don't leave the house unless absolutely necessary. Groceries and meds are delivered and Fireworks mean a night in the bathtub with pillows and earplugs.
If I'm out and feeling faint, I wear my disability pass so I can sit on the bus or train or if it gets really bad I will sit on the floor and put my body in the recovery position if I have to.
Some days I have to take taxis.
On very good days, I cycle."This is the thing with PTSD and the military guys, were all different. For me I managed to control it, took a bloody long time and alot of effort. I was at the point where I couldn't leave the house. Managed to reinstate my license including HGV, because of medication. Cars were my therapy. It was what got me out my room and house. That why I find my car a good place to go to cope. Which is why I clean it so much and occupy myself with it. Its a distraction, just like farming when my mind can go. There is no way im getting on a bus or train. Ive got no direct escape point, if I can't control my exit routes, im not going in or on it. Last time I was on a bus, I smashed 2 window and broke the door in order to get off. Which is mad because I'll get on a plane with ease, which sounds odd, but knowing my past allows it to make sense. As for the fireworks, they really mess me up. | |||
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"If you have some chronic health issues that affect your sexlife which I have at present, it feel very frustrating and make you wonder why you are on here knowing there is no chance of a meet or some little fun, I often think I should leave the lifestyle to keep myself sane! I am at the crossroads atm "I know the feeling pal. I'm not sure how much longer I can continue. | |||
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"Seems trivial compared to some of the stories on here..but 3 years in to Long Covid, not helped by still getting confronted by idiots denying that covid is real. Love to you all." I believe Covid can mess with peoples Autoimmune systems, I had long Covid with chronic fatigue had tests then discovered I have coeliac disease which caused vitamin deficiency, also thyroid problems after years of being stable and under control, sarcoidosis re activated fibromyalgia diagnosis these are all autoimmune illnesses, I don’t think the NHS can cope with all the after affects of Covid, with the time it’s taken to actually get to see a rheumatologist | |||
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"My injury was caused by the Covid-19 vaccine (astrazeneca). 2 blood clots left me paralysed for a while. On here with the help of injections. Hugs. The whole Covid thing just ruined a lot." Thank you. I'm trying to get back to some kind of normality, had my first sexual experience in almost 5 years on here. I'm glad she saw past the illness 😀. | |||
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"Morning. Happy sunday all. Having been diagnosed with some serious health issues just over a year ago and from the outside looking fit and well (I mean, look at my pics 😂😂) I recognise what a lonely and isolating place having 'hidden' health conditions can be so just wanted to create a thread to say I see you and would be more than happy to support. Take care x" Feel your pain mate, I have an auto-immune disease that is mostly "silent", but there are days where I'm well and truly fucked, and not in a good way | |||
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"If a condition can't be seen people don't believe it exists. " Deafness? | |||
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"The filthy looks when parking in a disabled bay, they even check the badge "Too many people have abused and at the same time having a smashed up leg or kneecap is no guarantee of getting a Blue badge, despite using a wheel chair and zimmer frame. | |||
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"Asthma. It ain't easy being wheezy "I hear you. I hate the comments like this: 'You should get more exercise' 'Pack the fags in' 'What's wrong with you man, it's only a little jog?' 'Stop sighing and yawning' 'Do you have to breathe like that?' In fact I've got dysfunctional breathing, not exercised induced asthma, which even confused the specialists for nearly four decades. There is no magic pill or inhaler for this. | |||
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"IBS and oat intolerance are two conditions that should remain hidden. RADAR keys are lifesavers. "I have a radar key too, as well as my other problems I have kidney stones and take diaretics so can need the loo urgently, also have coeliac disease and gout medication seems to be having an effect on my stomach recently | |||
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"If a condition can't be seen people don't believe it exists. " Stupid comments like'you don't look deaf' must drive some people irate. | |||
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"Morning. Happy sunday all. Having been diagnosed with some serious health issues just over a year ago and from the outside looking fit and well (I mean, look at my pics 😂😂) I recognise what a lonely and isolating place having 'hidden' health conditions can be so just wanted to create a thread to say I see you and would be more than happy to support. Take care x" I have chronic lymphositic leukaemia which in the main doesn't affect my life. I feel fit and well but do have to be super careful when it comes to infections due to a low functioning immune system. More than happy for a natter if anyone wants to. Good luck everyone | |||
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"Morning. Happy sunday all. Having been diagnosed with some serious health issues just over a year ago and from the outside looking fit and well (I mean, look at my pics 😂😂) I recognise what a lonely and isolating place having 'hidden' health conditions can be so just wanted to create a thread to say I see you and would be more than happy to support. Take care x" Feel your pain. COPD isn't visually obvious, neither is polyarticular arthritis (both knees, both hips, both hands n wrists, right elbow) and spondylosis in neck. Apart from coughing myself inside out and walking with a crutch I look outwardly healthy but usually in a lot of pain. Unfortunately a lot of debilitating stuff isn't visually apparent. Waking up several times a night because of pain isn't something that shows outwardly but something that is invisible and one just has to put up with.
Doesn't stop me trying to be cheerful and helpful but.... | |||
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"Morning. Happy sunday all. Having been diagnosed with some serious health issues just over a year ago and from the outside looking fit and well (I mean, look at my pics 😂😂) I recognise what a lonely and isolating place having 'hidden' health conditions can be so just wanted to create a thread to say I see you and would be more than happy to support. Take care x Feel your pain. COPD isn't visually obvious, neither is polyarticular arthritis (both knees, both hips, both hands n wrists, right elbow) and spondylosis in neck. Apart from coughing myself inside out and walking with a crutch I look outwardly healthy but usually in a lot of pain. Unfortunately a lot of debilitating stuff isn't visually apparent. Waking up several times a night because of pain isn't something that shows outwardly but something that is invisible and one just has to put up with.
Doesn't stop me trying to be cheerful and helpful but...."Feel your pain there hubby has copd and can literally hear him choking sometimes plus he has spinal injury | |||
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"Iv (Kat) had a life of medical problems from the age of 18 months. 25 + surgeries, more to come too. Stage 4 endometriosis, Crohn’s, inflammatory arthritis just to name a few. I’m a larger woman and always have been, but nothing I suffer with has anything to do with my weight, the medical community still seems to think losing weight and moving more will cure me of my incurable diseases. It can be incredibly lonely, very difficult to feel sexy.. however I have the sexdrive of a Randy teen. " Endo is horrendous isn't it, stage 4 here too and grateful for Mirena I've also PCOS and fibroids (not always lifestyle friendly!) Just been diagnosed with osteoarthritis on top of cPTSD and the oh so very visible eczema | |||
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"Both of us suffer with bile acid malabsorbsion ( bam for short) as well as a few other things. I (Jason) fortunately am the one who has it worse. Severe depression, meralgia paresthitica and now a non cancerous mass pressing on my brain. ( falling apart with a grin I say lol). Hidden conditions are so isolating. I see other humans once a week. The rest of the time I'm stuck in my room as I can't predict a bad bam flare up. There are no triggers and no warnings. I take a lot of extra meds on a Saturday just so I can function but that makes me feel crap for days after but its worth it. It's so bad that last year I almost did something very very stupid but the owner of Pandoras, who is an amazing woman, saw through me and literally saved me. I used to be so active but this condition has taken away my social circle, my career, my confidence and my self worth. This community has given me so much of that back. We have been made so welcome and since we started hosting events I feel useful again. It's amazing what one day a week can do. Yet people look at you like your faking it. Dr's a lot of the time just say loose weight (not easy with Bam). I was lucky enough to have a consultant that knew about my condition and tried to help.not everyone is so blessed. Now every shopping trip is planned around where the toilets are. Holidays don't happen. I can't even see my son get married next month. But have this. This community. The people who are part of this amazing lifestyle. You lot are so accepting and supportive. You let me feel human again and I can never thank you lot enough " Hugs | |||
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"Morning. Happy sunday all. Having been diagnosed with some serious health issues just over a year ago and from the outside looking fit and well (I mean, look at my pics 😂😂) I recognise what a lonely and isolating place having 'hidden' health conditions can be so just wanted to create a thread to say I see you and would be more than happy to support. Take care x Feel your pain. COPD isn't visually obvious, neither is polyarticular arthritis (both knees, both hips, both hands n wrists, right elbow) and spondylosis in neck. Apart from coughing myself inside out and walking with a crutch I look outwardly healthy but usually in a lot of pain. Unfortunately a lot of debilitating stuff isn't visually apparent. Waking up several times a night because of pain isn't something that shows outwardly but something that is invisible and one just has to put up with.
Doesn't stop me trying to be cheerful and helpful but....
Feel your pain there hubby has copd and can literally hear him choking sometimes plus he has spinal injury"Ex wife made me sleep on sofa due to my COPD. Every time I started a coughing fit (and they can be very painful) all I heard from upstairs was aggressive abuse and being told to shut up or die | |||
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"Iv (Kat) had a life of medical problems from the age of 18 months. 25 + surgeries, more to come too. Stage 4 endometriosis, Crohn’s, inflammatory arthritis just to name a few. I’m a larger woman and always have been, but nothing I suffer with has anything to do with my weight, the medical community still seems to think losing weight and moving more will cure me of my incurable diseases. It can be incredibly lonely, very difficult to feel sexy.. however I have the sexdrive of a Randy teen. Endo is horrendous isn't it, stage 4 here too and grateful for Mirena I've also PCOS and fibroids (not always lifestyle friendly!) Just been diagnosed with osteoarthritis on top of cPTSD and the oh so very visible eczema "Endometriosis here too. Currently recovering from my first surgery and hoping the mirena is the magic cure they all say it is. Tink | |||
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"If a condition can't be seen people don't believe it exists. " . I have a stoma! | |||
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"Epilepsy if that is classed as a disability seems to freak a lot of people out " It does and i dont know why i have it to | |||
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"Iv (Kat) had a life of medical problems from the age of 18 months. 25 + surgeries, more to come too. Stage 4 endometriosis, Crohn’s, inflammatory arthritis just to name a few. I’m a larger woman and always have been, but nothing I suffer with has anything to do with my weight, the medical community still seems to think losing weight and moving more will cure me of my incurable diseases. It can be incredibly lonely, very difficult to feel sexy.. however I have the sexdrive of a Randy teen. Endo is horrendous isn't it, stage 4 here too and grateful for Mirena I've also PCOS and fibroids (not always lifestyle friendly!) Just been diagnosed with osteoarthritis on top of cPTSD and the oh so very visible eczema
Endometriosis here too. Currently recovering from my first surgery and hoping the mirena is the magic cure they all say it is.
Tink"My first mirena was brilliant but this second one has been a nightmare | |||
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"If a condition can't be seen people don't believe it exists. " So true...My Daughter in law has Ehlers Danlos and on the outside looks fine, but her joints ache and she tires easily, it's debilitating...She has a blue badge but doesn't use it, or park in the disabled bays because of the abuse people give her, it's disgusting | |||
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"My money is on Lyme Disease, but my GP is reluctant to do the test." Was a reason given, or was it simply dismissed as an option? | |||
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"Epilepsy if that is classed as a disability seems to freak a lot of people out " Got diagnosed with Epilepsy when I was 22. (Technically not epileptic, but classed as it after having 2 episodes) All bought on as the result of a drink spiking. 4 days in hospital (none of which I recall) Blood screen returned as having "a significant quantity of methylenedioxymethamphetamine in my sample". Found out years later it was the equivalent of 7 tabs. It's been well controlled, but has had its knock on effects on amount of the meds. | |||
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"I have a heart condition. Mostly fine with it but it can be debilitating, I tire easily but I don't let it stop me. This thread just brings home that you never know what people are dealing with in life "This is so well said.. let’s not judge others .. if we don’t know them we don’t know what they’re dealing with .. let’s just enjoy each as much as we can x | |||
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"If a condition can't be seen people don't believe it exists. Yes, totally, I am lucky in some respects that my condition is recognised and there is some specialist support, can't imagine how difficult it must be to not have at least some recognition, I hope you are keeping well. I'm as for as a fiddle thank you " Did you try biologics (Amgevita) game changer for my mate | |||
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"I have a heart condition. Mostly fine with it but it can be debilitating, I tire easily but I don't let it stop me. This thread just brings home that you never know what people are dealing with in life
This is so well said.. let’s not judge others .. if we don’t know them we don’t know what they’re dealing with .. let’s just enjoy each as much as we can x"* each other | |||
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"My money is on Lyme Disease, but my GP is reluctant to do the test. Was a reason given, or was it simply dismissed as an option?" He just hasn't responded to my last couple of messages. To be fair, maybe he's waiting for the results of the MRI this weekend, but it certainly ticks a lot of boxes for my symptoms. Though as the haematology consultant said with a chuckle, I'm a bit of a complex case | |||
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"He just hasn't responded to my last couple of messages. To be fair, maybe he's waiting for the results of the MRI this weekend, but it certainly ticks a lot of boxes for my symptoms. Though as the haematology consultant said with a chuckle, I'm a bit of a complex case "Glad it's likely more an issue of timing than being ignored. Keep the consultants on their toes with your extra special blood, hope you get a definitive answer and a plan of action to get healthy asap  | |||
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"Morning. Happy sunday all. Having been diagnosed with some serious health issues just over a year ago and from the outside looking fit and well (I mean, look at my pics 😂😂) I recognise what a lonely and isolating place having 'hidden' health conditions can be so just wanted to create a thread to say I see you and would be more than happy to support. Take care x I have chronic lymphositic leukaemia which in the main doesn't affect my life. I feel fit and well but do have to be super careful when it comes to infections due to a low functioning immune system. More than happy for a natter if anyone wants to. Good luck everyone " I have cll aswell diagnosed 2 years ago mines very unstable at moment | |||
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"If a condition can't be seen people don't believe it exists. " Yes, that is all too true, sadly. I have had a chronic, debilitating, slowly degenerative condition for most of my adult life, intermittently in the earlier years and continuously in recent years and because I don’t normally look ill it is obvious that a lot of people don’t think that there is anything wrong with me or at least don’t realise how serious it is unless I am doing something that makes it obvious, especially as I try not to let it show. | |||
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"My money is on Lyme Disease, but my GP is reluctant to do the test. Was a reason given, or was it simply dismissed as an option? He just hasn't responded to my last couple of messages. To be fair, maybe he's waiting for the results of the MRI this weekend, but it certainly ticks a lot of boxes for my symptoms. Though as the haematology consultant said with a chuckle, I'm a bit of a complex case "I have just last week managed to get Immunology to test for Lyme.. I'm not sure if it's just something a consultant can order bloods for.. I don't think it would matter what department | |||
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"Photosensitive Epilepsy, so have to be careful. No wonder people avoid me "I married a man with epilepsy. | |||
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"Well, the haematologist thinks I have APS as I managed to get a DVT while taking apixaban, so that's another ailment to add to the Bipolar and Sarcoidosis lol. MRI on my head this weekend, hoping to find the cause of facial palsy and extreme fatigue. My money is on Lyme Disease, but my GP is reluctant to do the test. My medically minded sister tells me longterm Lyme can be spotted on an MRI though, so fingers crossed." have you ever thought that what you think might Lyme could possibly be Neuro sarcoidosis, very few doctors have much knowledge about it other than it affecting the Lungs it can affect any organ of the body | |||
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"I suffer with long term illness too but I won't let it affect me " It's not necessarily a matter of choice. | |||
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"I have Ehlers Danlos. Yes it's a disability but also... an advantage. I'm hyper flexible, have very soft skin and feminine Q angles. " Hi from a fellow bendy (Moonwitch) | |||
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"The filthy looks when parking in a disabled bay, they even check the badge
Get this quote often, blue badge for the PTSD. Ive used it twice. Both times got foul looks off people and then lead to futher confrontations, including being called a "pussy" because i had a little rough time.
I just dont use it now and hope for the best. My car is a safe space for me, I have a passion for keeping it immaculate and well maintained, so its a place I go that creates a neutral calm environment, so if im in a shop and something triggers me, I know go to my car, which is often furthest end of the car park now so it doesnt get damaged.
Aww bless you hear with the car.
I have childhood trauma but unfortunately it affects me in a way that I should NOT be driving in London.
I sit in a support group with plenty of ex Military and some don't leave the house unless absolutely necessary. Groceries and meds are delivered and Fireworks mean a night in the bathtub with pillows and earplugs.
If I'm out and feeling faint, I wear my disability pass so I can sit on the bus or train or if it gets really bad I will sit on the floor and put my body in the recovery position if I have to.
Some days I have to take taxis.
On very good days, I cycle.
This is the thing with PTSD and the military guys, were all different.
For me I managed to control it, took a bloody long time and alot of effort. I was at the point where I couldn't leave the house. Managed to reinstate my license including HGV, because of medication.
Cars were my therapy. It was what got me out my room and house. That why I find my car a good place to go to cope. Which is why I clean it so much and occupy myself with it. Its a distraction, just like farming when my mind can go.
There is no way im getting on a bus or train. Ive got no direct escape point, if I can't control my exit routes, im not going in or on it. Last time I was on a bus, I smashed 2 window and broke the door in order to get off. Which is mad because I'll get on a plane with ease, which sounds odd, but knowing my past allows it to make sense.
As for the fireworks, they really mess me up. "I hear that. the medication they gave me , make me even less alert so driving in London no way. There's about 20-50 more hazards to be hypervigilant for than say the countryside. Even my safety buddy doesn't drive far from home. If she had to go to the other side of London she takes a taxi or public transport. With me, I just curl up in a ball and wear my disability lanyard, if I get triggered in public. To be fair I've had more ranting on buses and trains than I've heard on planes. Hugs. sounds like you've found a nice peaceful place and routine to help cope. Which is all most of us need. | |||
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