Not feeling much like a warrior today. Rough chemo session. Trying to switch off but brain won't allow
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So sorry to those of you going through difficult health issues. It's not fair at all.
I'm trying to figure out what's wrong with me; constant fatigue, depression, awful drawn-out PMS and periods, itching all over, sometimes randomly blacking out for seemingly no reason. Pretty sure it's my thyroid but the doctor tested for it last year and the results were normal. I'm going for another blood test tomorrow to see if my thyroid has changed and finally have found a doctor who is being helpful. She also told me to have an ECG to track my heart, which I can't believe no doctor has ever suggested before considering I've had chest pains and blacking out for years! Results looked normal, though.
Reading this thread is kind of disheartening because I currently feel a lot of guilt and like I'm lazy (and worry a lot about other people thinking I'm lazy or exaggerating how bad I feel) and can't tell them I'm struggling with a certain illness because I haven't been diagnosed, but it sounds like people still don't take it seriously when it has a name, so I guess a thicker skin is needed! Any tips on how to stop worrying whether or not people believe you?
Take care everyone.x
I'm trying to figure out what's wrong with me; constant fatigue, depression, awful drawn-out PMS and periods, itching all over, sometimes randomly blacking out for seemingly no reason. Pretty sure it's my thyroid but the doctor tested for it last year and the results were normal. I'm going for another blood test tomorrow to see if my thyroid has changed and finally have found a doctor who is being helpful. She also told me to have an ECG to track my heart, which I can't believe no doctor has ever suggested before considering I've had chest pains and blacking out for years! Results looked normal, though.
Reading this thread is kind of disheartening because I currently feel a lot of guilt and like I'm lazy (and worry a lot about other people thinking I'm lazy or exaggerating how bad I feel) and can't tell them I'm struggling with a certain illness because I haven't been diagnosed, but it sounds like people still don't take it seriously when it has a name, so I guess a thicker skin is needed! Any tips on how to stop worrying whether or not people believe you?
Take care everyone.x
Yup. I’ve got MS
I've read that blacking out can sometimes be linked to mental health. I've had a few instances of syncope-type blackouts where its been brought on by me seeing something distressing (for me its usually been a fear - like when that gymnast broke their leg during the Olympics a few years ago) that has then made me feel really sick/anxious. I can usually spot the signs now and will make sure I lie down before it happens.
It sounds like it could be psychogenic type blackouts though? http://www.heartrhythmalliance.org/stars/uk/psychogenic-blackouts It says it can be brought on by chronic fatigue, IBS, fibro and similar conditions.
Thank you for the link. A doctor once told me they were probably panic attacks but I feel a bit like that was just brushing them off (not that panic attacks aren't serious) because I didn't feel particularly anxious before some of them and the first time it happened I was a child/early teen and I've felt much more panicky other times and not blacked out! Bodies are confusing.
Glad you've found a way to spot it coming on - I usually just need to lie down for a while too and have had to lie on some grim floors, haha.
Me! I have Cystic Fibrosis which can be quite crappy at times 
I have Ehlers Danlos Syndrome type 3 (hypermobile). Let to depression last year after I had my kids and had to quit work with a bad bout of chronic fatigue too. I'm almost ready to get back in the saddle though and start university/work again, I feel for anyone who's dealing with a chronic lifelong condition, no cure to mine and it took a while for me to get over that.
I had fibro for around 5 years, became basically housebound and needed a stick sometimes to walk.
I tried everything and the pain management clinic basically went oh well we've done everything, you just need to live with it, I was 23. I then found Mickel Therapy which changed my life and I definitely wouldn't have my son without it. (Sounds cheesy, but I could barely look after myself so I personally wouldn't have coped with pregnancy or a child at that point).
I'm now pretty much 100% pain free and manage to get to the gym and run after my 2 year old. When I start to get symptoms creeping back in (It's usually in my hands and then brain fog), I just book a refresher session again and it helps me get back on track.
It sounded like a lot of crap to me when I first read about it, but I was willing to try any thing and it's the only thing that has helped.
This isn't some ad or anything, I know that it's not well known so I just wanted to share my experience in case it was helpful to anyone.
I tried everything and the pain management clinic basically went oh well we've done everything, you just need to live with it, I was 23. I then found Mickel Therapy which changed my life and I definitely wouldn't have my son without it. (Sounds cheesy, but I could barely look after myself so I personally wouldn't have coped with pregnancy or a child at that point).
I'm now pretty much 100% pain free and manage to get to the gym and run after my 2 year old. When I start to get symptoms creeping back in (It's usually in my hands and then brain fog), I just book a refresher session again and it helps me get back on track.
It sounded like a lot of crap to me when I first read about it, but I was willing to try any thing and it's the only thing that has helped.
This isn't some ad or anything, I know that it's not well known so I just wanted to share my experience in case it was helpful to anyone.
I have Gastroparesis and POTS along with chronic gastritis, ulcers and post surgery dumping syndrome and I'm at home all the time and try to work from here, which is why I'm here so much 
But I'm glad there's a thread for this, it's helpful to know others are battling the same kinds of things and it gives me willpower to push on.
But I'm glad there's a thread for this, it's helpful to know others are battling the same kinds of things and it gives me willpower to push on.
I have Fibromyalgia. I agree with you it is a horrible condition and more needs to be done to help people who are suffering.
It enrages me because so many professionals are like to and have no empathy for you. I feel like saying try being for a day and then tell me it is not real.
I was diagnosed with Ulcerative Colitis 3 months ago so pretty new to the whole chronic illness thing.
I find the fatigue the hardest to deal with, it's so hard to just get out of bed and no one understands, I often get the reply 'I'm tired too'. But no one gets that it's another level, like having to get past a huge mental/physical barrier or 'walking through mud'. I'm in remission but think this is just part of having a chronic illness that I'll have to live with. Feel so sad when I see everyone living life and I'm like this at 26.
I find the fatigue the hardest to deal with, it's so hard to just get out of bed and no one understands, I often get the reply 'I'm tired too'. But no one gets that it's another level, like having to get past a huge mental/physical barrier or 'walking through mud'. I'm in remission but think this is just part of having a chronic illness that I'll have to live with. Feel so sad when I see everyone living life and I'm like this at 26.
Just out of interest have any of you who have spent lengths of time mostly housebound ended up with social anxiety and agoraphobia? Even if you were extremely sociable before.
My anxiety got a whole lot worse after becoming ill. Especially my social anxiety. I'm currently in therapy for it.
Thank youHope it helps.
I suffered multiple pulmonary embolisms 7 years ago and almost lost my life, my fitness never returned and I was put on warfarin for life. Three years later both of my knees went big time and I was housebound for a good while x rays showed chronic osteoarthritis in both knees and it's also in the back of my femur on my right leg. I also developed chronic peripheral lymphedema around the same time and my legs are now around 4 times the size they should be and so heavy and painful, getting shoes now is nigh on impossible and I can no longer wear my wedding ring. I thought things couldn't get any worse and then last year I was rushed in to hospital and kept in resuss for 5 hours with a heart rate of 200+ beats a minute. I spent several days in hospital and was finally diagnosed with atrial fibrillation. Then two days after Christmas I found out I am in the early stages of heart failure.
I am in constant pain, the tramadol no longer works, I am constantly out of puff partly due to the damage done by the PEs and partly because of my heart problems but do you know what, I'm still alive.
I figured I could do one of two things, sit there, dwell on things and just allow myself to vegitate OR make the best of the hand I've been dealt. I've just had a few days at the seaside, I couldn't walk far and it feckin hurt like hell. The fresh air did me so much good though and I actually slept for a few hours each night. I practice mindfulness have found hobbies that distract me from thinking about my pain and conditions and I smile every day.
Life is short, it is up to us to make the best of it, it isn't easy but for me in particular giving up just isn't an option. There are actually people out there who are far worse off and would trade places with us and that humbles me. Use it or lose it.
I am in constant pain, the tramadol no longer works, I am constantly out of puff partly due to the damage done by the PEs and partly because of my heart problems but do you know what, I'm still alive.
I figured I could do one of two things, sit there, dwell on things and just allow myself to vegitate OR make the best of the hand I've been dealt. I've just had a few days at the seaside, I couldn't walk far and it feckin hurt like hell. The fresh air did me so much good though and I actually slept for a few hours each night. I practice mindfulness have found hobbies that distract me from thinking about my pain and conditions and I smile every day.
Life is short, it is up to us to make the best of it, it isn't easy but for me in particular giving up just isn't an option. There are actually people out there who are far worse off and would trade places with us and that humbles me. Use it or lose it.
I have m.e was diagnosed in 2011, rarely left my bed for a year, fell pregnant and had my son in 2013 and was okay ish, more good days than bad, had my daughter in 2015 and had a couple of amazing years, the last 6 months I feel like I've been hit by a truck again, literally everything hurts and I just sleep.
My son has also been diagnosed with m.e, apparently one of the youngest people to receive a proper diagnosis.
My son has also been diagnosed with m.e, apparently one of the youngest people to receive a proper diagnosis.
You are definitely not alone.x I also have Fibromyalgia/fArthritis/degenerative disc disease.All are painful ,but fibro is so debilitating ,so i truly understand how you feel.It`s not just the chronic pain ,which i can experience day and night ,but the dreadful exhaustion and nausea.I come here to take my mind off the nagging pain etc ,i can always find a post or more which make me smile.I`m glad you`ve started this thread.It`s not wanting to bemoan our lot ,just to feel (as you say) less alone.I found out who my true friends were when i was diagnosed ,and ,as time`s gone on ,been unable to keep up with certain people.However ,i`ve also made some new friends who are there in good times and bad..Hope today has been a little kinder to you?Xx
At the beginning yes.Especially the pain clinic specialists ,who seemed to lack any compassion!They gradually ruled out various conditions ,and i saw a wonderful gp who knew exactly what my symptoms were (and this was 20 years ago).It was such a relief to finally feel vindicated ,as they can make you feel such a fraud.I had a sick husband at the time ,and 3 very small children.I kept saying i didn`t have time to feel so lousy ,and why couldn`t they just explain why my joints were swelling ,why i felt abnormally tired ,and constantly hurt ,everywhere.I guess because ,unlike my joint and back problems ,there wasn`t a scan/xray to verify the condition.
Now it`s so widely known about ,in drs surgeries etc ,they seem to have a better understanding.I no longer am dismissed when i ask about burning/aching in various parts of my body .Plus there are very real symptoms ,hot swollen elbows /heels etc. I guess what i`m trying to say is i find there`s more empathy (IF you have the right Dr) nowadays.
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I have PMDD which it may be worth you looking in to if your PMS symptoms are really severe and affect your day to day life when they occur