Thank you so much my wonderful, supportive friend, always being there. No one is perfect, you do you, I do lol x

You really are a wonderful human being Glenda. So supportive and caring. Your words have reduced me to tears! Thank you for your constant support. I will always try to avoid any surgeries because of the risks of surgery with my genetic condition, although one of my brothers has had spinal surgery and it really did help him and he recovered well but for me it's so much more than just my back, my entire body is affected by my Ehlers-danlos syndrome and I have issues with my hip, pelvis and si joints in all that area but also other limbs too. So I think, trying to fix one area won't work, it'll just put on to another and make it worse. You would've thought they would give me an mri. I did have one about 5/6 yrs ago one time when this happened and I lost the feeling in my leg and had saddle numbness but it took weeks to get it done and they said there was a lot of wear and tear etc but couldn't see a prolapsed disc but again. It felt like it was a bit better at this point, I could move and stand again. So it feels like the mri needs to happen when this happens to my back really! I've had physio on and off since I was 13 and started having problems with my back, I've been to pain clinic, pain management, therapy, physiotherapy, hydrotherapy. You name it, I've probably done it and I've given up with all of it but when my back is like that I literally can't even go to the toilet by myself and I don't like that. I'm sorry what you have been through and I really sympathise with you. Massive hugs for you. You are one caring and so strong woman 🤗😊 xxxx

You being a nurse is obviously where your lovely caring nature comes from. I know how bad the fatigue can get too and yes, I know that all this stress and upset has made me so much worse it really impacts your body so much, its affected my allergies, my body, pain, fatigue, mood. All of it! I'm getting there and by taking that pressure off it's helping xxxx

@@ThefarfromperfectMumChats you are truly up against it, you really are. Inescapable. Your bro was lucky. You and I have pretty much tried it all. We have intractable pain.caused by different issues,independently. Mine is widespread inflammatory arthritis I believe,but I’ve yet to be followed up by rheumatologist,whose supposed to get me off steroids and onto anti disease drugs. All I know is,I’ve had this ten years and nobody has questioned why,because I’m fifty,and been this way a while. I have lost two and a half inches height which a dr friend told me is bad for the age I’m in. I have been offered brain decompression surgery to alleviate some of headaches,due to worsening symptoms of a congenital condition in the back of my brain.get vertigo too. I’m not going for it. Again,it’s risky af ,chipping a tiny bit off skul and neck. I will put up with headaches unless or until I have no choice. My back is identical to you,including the toilet,if I’m honest,pain is so bad,can’t even cut food,it’s too painful to pee and poo and end up with enemas. As you say,it’s so so much more I think we all need to be shown understanding,empathy and support. It’s lonely doing life.and I know this very well xxxxxx

@@ThefarfromperfectMumChats as time passes,you will regain your equilibrium and be back to more or less where you were. I remember when dad passed,i was having bad toothache and I couldn’t stick it anymore and as a daughter that went home to look after him,my duty was done,he was finally at peace and went to the dentist the following day (even though dentist said you shouldn’t be here) what entailed was three episodes of complications,out of four,three teeth out,dry socket,failed extraction due to infection and abscess which destroyed my root nerve and three stone weight loss in three months following his passing. Then mother fell I’ll,took her to dr,X-ray,then ctscan and weeks later she was terminal lung cancer and so again I was chief nurse for three months,three months again,away from the husband and we lost her eleven month and one day after dad. And after mam, I eventually had to go on pills for blood pressure. I’m a believer that stress is a massive trigger and I know your struggle is real lovely. Time is a healer. But only you will be able to dictate the when and how.not what people tell you to.our coping mechanisms are different individually.so,please don’t rush it to conform,you have to heal your way. Xxxxx

So much there that you are going through. Massive massive hugs for you. I can relate, I know how it feels and at times it is a miserable existence. I also get horrific headaches and migraines and it is coming. From my neck, they won't investigate it though. I will go private for that at some point as its best done with an upright mri so would never get done on the nhs. Will cross that bridge when I come to it and when I have saved the money up. Keep going Glenda, you're a bad ass!!!!! As hard as it is, we do it and we push through, that makes us amazing 😊😁. I saw the dr today, she is sending me for mri and wants me to have physio xxxx

I have eds too, so I do understand, it's what I struggle with and that's why I like to try to make my life as easy as possible and find things to make life easier! Big hugs x

@@thefarfromperfectmum my 6 year old daughter has it as well my mum was diagnosed with it in 1951. It's an absolute shit show of a condition to have as all they can do is basically throw painkillers at it. My 23 year old son has the stretchy skin but I've always gone on the if my kids want tested for it that's their choice and he saw the struggle to be taken seriously by the main so called specialist so he's not bothered about being tested. I see the struggles my 6 year old goes through and it's like why did it take so long for them to pick it up with me but I played sport until the age of 16 and then the pain got too bad. I know I'm heading for a wheelchair but I said to my ex husband on the phone I have 9 years until my youngest is out of school and until then I will do everything in my power to stay out of it as its hard to be the child of a parent with a disability especially eds as its still very misunderstood as some kids can be brutal. They are still trying to find the right pain meds to help x

I hear you. I can't believe your mum was diagnosed in 1951!! Thats amazing, they didn't seem to know anything about it then. I wasn't diagnosed until I 25 despite all my symptoms but I also was very active and played sports, even though I was in awful pain I just carried on and having children makes you worse too. I have 4 children all with eds. It is extremely hard to be a disabled parent and to have disabled children as well. It's constant fighting for what they need. I have made myself so much worse by trying to do everything as a single mum. This is why I wanted to share how I take the pressure off and help myself, it's not perfect and it's not enough but it's helps xx