Haydensage

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Feeling shocked by next step with urological stuff 🤯😳🥺
So I had an appointment today with the Bladder & Bowel team (first face to face appointment in around 5 years…!) as I’ve been getting worse bladder symptoms that, now I have the formal diagnosis of hEDS, I wanted to push to get actually investigated and not just assumed as linked to my back injury or severe B12 deficiency nerve damage… she wasn’t initially keen to refer me to Urology, but has now said that she will speak to her colleague tomorrow at the other hospital and see if they can suggest anything they can do in terms of investigations or if we just continue with the next stage of the plan with this team (that is happening regardless). This next bit is the one that has left me fully shocked as she has referred me to a nurse specialist to learn how to carry out intermittent self catheterisation (ISC) in the hopes that it resolves the urgency incontinence, frequent UTI’s and urinary retention issues I get. I don’t know of anyone who has ever done anything like this to themselves and so it has sent my anxiety through the roof, leaving my IBS playing up and a splitting headache. Not helpful as we have a heatwave again in the UK 🥺. Has anyone here had positive experiences with ISC that you are willing to share? Normally I’d ask for all experiences but right now I’m really scared and anxious so am asking that negative ones are not shared, just to allow me time to calm these feelings before I get the bigger picture - I have previously refused/delayed treatment after hearing negative experiences and ended up needing emergency hospital admission and far more invasive treatment to get me well (ish!) again. Thanks in advance! 🦓🦓🦓 #HEDS #EhlersDanlosSyndrome #ChronicIllnessEDS #ChronicPain #BladderIncontinence #BladderIssues
I had a knee dislocation today while I was literally just sitting on the couch. It was so jarring and random. I’ve dislocated my knees plenty of times but it’s still terrifying every time. Now tonight I’m feeling very anxious and kinda traumatized tbh.
I just want my body to be able to feel relaxed for once. I hate the constant muscle guarding and never being able to get comfortable. I hate having this very real fear that something can come out of place at any second.
Does anyone relate to not feeling safe in your body because of the instability?
Idk what I’m looking for here w/ this post but I’m just feeling kind of alone with all of these feelings right now. It just sucks.
My doctors think I might have pots and hEDS now. Not sure how to feel about these potential diagnoses because it just means more doctors appointments and more medications :/ #HEDS #POTS
My CCI has been freaking me out lately. My neck has been cracking a lot lately. I can feel my cervical vertebrae sliding in and out of place. If I massage the back of my neck I get a raging headache. I looked up to look at the stars the other night and got very dizzy and gave myself a headache. Last night, I tilted my head up to kiss my husband and had the same thing happen.
I wear my Aspen collar twice a day and when I'm a passenger. I wear my soft collar when I drive.
Is PT worth the time, expense and effort? My insurance is awesome so that isn't an issue at least.
I can't tell if I should be genuinely concerned or if I'm just panicking.
I really hope all of this makes sense. Thanks for reading. #HEDS #CCI
After months of bed-bound difficulties (rapid gastric emptying, POTS-like issues, subluxations & injury of my knee, neck, hip), I’m in one of those euphoria upswings of decent health. I’m grateful to move without debilitating pain, complete chores, be social, and have renewed hope. Nothing changed magically. I work daily on my health, trying to get diagnoses & treatment, resting, cardio everyday (thankful I found a pedal machine that lets me move even when my body doesn’t want to), meditating, increased protein intake, salt & fluids, losing weight, and researching. I also let go of daily plans/expectations and try to just focus on what is in front of me. I’m a little POTS-y today, so will rest more. Also a little gurgle in my gut, so castor oil pack treatment as well. Also just finished a check-in appt with my therapist. We book my phone appointment every 3-4 weeks. It gives me comfort knowing it is there. Sometimes I need her to help me shift perspective, hold me accountable, or to help me give myself permission to do what my body needs. Sometimes I get to just brief her on how well all my strategies and tools are working for me. I have peace, grattitude, and hope. Things are getting better, and I feel better. My wish is that you get these beautiful breaks too, and they fill you with light, love, resilience, and strength too. #EDS #HEDS #POTS #gastricissues #Subluxations #grateful
I am so worried about my 5 year old daughter. She will be 6 in November, and is on the autism pathway waiting for assessment. Potentially she has PDA, ADD and a genetic disorder I have called hEDS. She has only recently gone full time at school but they still won’t let her finish at the same time as her peers and I have to pick her up early from the office. Her school friends often overtake her home though, as she walks slow. Often her friends go to the park together or have arranged play dates. They are almost always in pairs. Other parents barely talk to me, let alone arrange play dates. I know my daughter has been feeling increasingly isolated. Yesterday I picked up my daughter from school and she was already feeling very sensitive, she was crying and fed up. She was passed by several friends talking about their play dates they had arranged. She wanted to go to the park, I also had my 3.5 year old son in a pushchair (he potentially has ADHD and also wanted to go to the park) but it was 30 degrees and I worried it was too hot, and she had already started crying and getting upset. (Of course other parents didn’t care about this). All of this resulted in a full on breakdown of epic proportions. She was so upset and so overwhelmed she struggled with her breath, she couldn’t stop panic crying. Other parents overtook us on the way home and said nothing, didn’t ask if she was ok. My daughter is well-loved at school even though she is very quirky and I find this behaviour from other parents so isolating. I honestly feel so alone sometimes.
We got home and the continuous crying continued for about an hour. She wouldn’t let me touch her. She then proceeded to bite her fingers until they bled. She has been biting her fingers for about 10 months now, since she started reception year. She now has lumps on her fingers caused by scar tissue and infections. I am taking her to the nurse today, thinking she will get diagnosed with skin picking disorder (we are UK). Not sure how much they will do to help her as they continue trying to blame my parenting. I have done 6 parenting courses. Parenting SEND children is honestly so difficult, so thankless and no one helps you.
I am wondering what is going on at school and why she leaves so sensitive. I wonder if it is a build up of trying to fit in over the day and masking. I worry she is being bullied by a couple of kids also (she tells me she was pushed at one point and called a baby by one boy). Also I think the isolation she feels from leaving at different times and being unable to make those connections is finally getting to her. It upsets me so much to see her like this. I have chronic illness (hEDS, fibromyalgia and a blood clotting disorder). Last week I was in hospital with a ruptured ovarian cyst, today I have the migraine from hell (I get bad pain, nausea, aura, blurred vision and unusual smells) and I feel like I can barely walk. Hubby is at work, I have no family near to help. I have to get my daughter into school with my 3 year old in tow. She doesn’t really want to go. Her attendance is already very poor (less than 60%). We are awaiting an EHCP assessment.
I just feel so alone with it all. I am struggling with my own health, my children’s extra needs. How do I calm my daughter’s anxiety? How do I make my GP give us extra help? I have considered taking her out of school and homeschooling her but I feel I am not well enough or capable of that. I am worried about her biting her fingers and causing herself serious infection as her fingers look so scarred and awful and her hygiene is not good (she impulsively touches herself down below and always plays in dirt) and I am forever trying to get her to wash her hands and nails. My anxiety is through the roof. Just looking for support really also as in very short supply from other parent/carers from her school.
Hi, everyone! My name is Carrie. I’m new here, looking for people that understand what I’m going through. I woke up one morning 4 years ago with pain in both elbows, and my health proceeded to rapidly deteriorate from there. I have severe chronic joint and bone pain that jumps around to different areas of my body, fatigue, dizziness, and brain fog. It’s a not-so-fun game to guess where it’s going to strike on any given day, and there’s no rhyme or reason to it. I have frequent flares that can completely knock me on my butt for days at a time, but even on flare-free days I live my life at a level 5-6 on the pain scale. Flare days are SO much worse! I’ve seen several doctors, including 2 rheumatologists, and all my bloodwork and scans come back normal. Doctors think I’m crazy, I even had one tell me that I should seek therapy to “learn coping skills to deal with minor aches and pains.” 🙄 My last rheumatologist tentatively diagnosed me with hypermobile Ehlers Danlos Syndrome , and then promptly retired, so now I get to start all over again with a new rheumatologist in September. I’m sympotomatic of rheumatoid arthritis , but my rh factor is negative. It’s all so maddening. I went from being an active mom to a shell of myself in less than 2 years, and now I battle depression on top of it. I’m a visual merchandiser for a big box retailer, so my job can be very physical, which doesn’t help my health issues, but I can’t quit my job because I have kids and a mortgage and I need the health insurance. Some days I honestly feel like I’m losing it. Sorry for the long post. I have a very supportive partner, but wanted to get to know some fellow spoonies that understand my struggles first-hand. ❤️ #HEDS #medicalmysteries #spoonielife
advice on healthily loosing weight with an ED, HEDS, PCOS , Depression etc. ??
I am currently quite overweight and I want to get into better shape and loose weight for myself and was told to by my doctors. but that seems almost impossible with all of my illnesses. First of all I have an Eating disorder (not specified, more binge eating) which makes food and body image very complicated and then I have PCOS , hashimoto’s and hypothyroidism which is already hard to loose weight with on top of hypermobile EDS which makes getting active and moving physically very hard and painful and to top it off low energy and motivation with depression . I’m trying to do this to just slightly feel better but I don’t exactly how. How do you stay in shape with these kinds of setbacks? i’m open to any advice! Thank you <3 #BingeEatingDisorder #PolycysticOvarySyndrome #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #EhlersDanlosSociety #EhlersDanlosSyndrome #Depression
Independence with Chronic and Mental Illness (advice appreciated!) #ChronicIllness #MentalHealth #ChronicDepression
I’m struggling so hard with being able to get and hold a job with my illnesses. I just got an awesome job with only weekend hours that paige $40 an hour and I worked one shift and then the next weekend I couldn’t work so they fired me saying I didn’t let them know in advance that I wasn’t doing well and might not be able to make it and that I cancelled with not enough time.😭 I’m 22 and I just want to get some independence like so many people my age have. I can’t drive or hold a job to eventually make money to buy a car and an apartment or be able to live in my own and it’s just so crushing. i’m so sick of it and I just want to be more independent but I don’t know how😩🥺 any suggestions, tips, words of encouragement, or ideas are greatly appreciated! thanks🥹 #ChronicDepression #ChronicIllness #HEDS
Summer = more pain, injuries, and fatigue
So I’m in the process of getting a hEDS diagnosis and I’m looking to be tested for POTS soon as well.
Does anyone relate to the heat making their symptoms for these conditions worse? For me, I get more pain flares and more injuries like dislocations and sprains in the summer. I’ve had some bad dislocations the last few summers that left me bed ridden for a couple months. I also get fatigued and dizzy a lot faster and more often.
Do you have any tips for managing symptoms and preventing too many injuries in hot weather? #HEDS #POTS
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1,125 Followers, 1,469 Following, 8 Posts - See Instagram photos and videos from Hayden Sage (@ haydensage )
hayden @ haydensage . Follow. Independence with Chronic and Mental Illness (advice appreciated!) #ChronicIllness #MentalHealth #ChronicDepression. I'm struggling so hard with being able to get and hold a job with my illnesses. I just got an awesome job with only weekend hours that paige $40 an hour and I worked one shift and then the next ...
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