Bleary-eyed

@bleary-eyed
I am just finishing a twelve year search for full diagnosis of my chronic condition which has been overlooked and ignored by local health services for most of this time. Like many sufferers , after years of people not joining the dots on my conditions , and leaving them untreated , I am now being smothered in an avalanche of disorders related to autoimmune and autoinflammatory symptoms. The latest bombshell is Behcets and EDS which seems to have already begun to affect my children too. The only thing I seem to have found a cure for is frustration , anger and stress, because surviving the minefield of medical services takes a mountain of mental strength. All I know now is that there is nothing that makes you feel more ill than trying to get well, and learning patience and serenity is the only way you will remain sane while becoming your " New Normal" when you friends only see the " Old Normal " casing on the outside.
Community Voices

It's all just too much

#TraumaticBrainInjury I got my first TBI 37 years ago. Had bad car accidents 6 & 8 years ago. People running stop signs.
I have car PTSD and around DV.
This past October I was assaulted by someone I was dating. I was on a vent for 3 days.
Because of the lack of oxygen I now have Hypoxic brain injury. The first 5 months after were terrible. My brain is broken, anxiety and panic all day everyday.
My brain was doing so much better. I was so proud of my self.
Second week of May I was admitted to the hospital with septic pneumonia. Got three breathing tubes on the right side so that one was doing better.
After 7 days I go home. Two weeks later back at the ER. Now it's the left lung which was a mess the first time I was there.
So that ends up being two more times I was hypoxic.
So TBI x2, PTSD, Hypoxia x3. I have had quite a set back brain wise. I'm angry, way confused, sad and really really tired. # brain injury, #PTSD , #CRPS , #DDD , #Fibro

30 people are talking about this
Community Voices

Seeking personal experience information from anyone with Endometrial Hyperplasia…..

I’ve been doing slot of thinking about previous things drs have said to me and my symptoms of my chronic lower abdominal pain. After googling I came across Endometrial Hyperplasia and would like to know more about it from those who actually have the condition so I can see whether it might be something to suggest to the drs to consider. #ChronicIllness #ChronicPain

7 people are talking about this
Community Voices

I'm Alice in Wonderland , until the Queen takes off my head!

So, you probably think at least life can never get boring when you look out of your window and see Barbie Pink Cows in Bright Blue fields. Or a visit from a summer wasp makes you feel like an actor in a 50's B movie. Can't be that bad right ?

Well think again.

Although , there is no way to test it , even my neurologist was unwilling to put the diagnosis in my notes in case his colleagues wouldn't believe him , I seem to be suffering from a rare type of Migraine condition called Alice in Wonderland Syndrome.

Along with the other wild and not so wonderful migraine varieties in my head's bag of nasty tricks , this syndrome causes me to see strange hallucinations , or makes the people and objects around me change shape and size before it finally finishes the psychedelic field trip with an intense migraine head ache.

Before , I discovered , ' being Alice', could actually be a thing , I mostly kept what I was seeing to myself.

I hadn't linked the fact that these visions were followed by head pain , and that it could be the onset of the Migraine that caused them. In fact , I was convinced that I was mad in a way that nobody would understand , and thought the headache only happened because of the way my mind was being overwhelmed by the experience.

I only discovered the rare set of symptoms in the Migraine family when I had been diagnosed with Chronic Migraine Syndrome and my Neurologist suggested that I look up the different types of Migraine that I was having , so that I could understand what I was going through and why.

( I suffer from many Migraines in the Spectrum including Thunderclap , Migraine with Aura , activity onset , orgasm onset, and Stroke like Migraine).

When , I returned for my follow up appointment , I mentioned the syndrome , he hadn't really heard of it , but looking back on the notes from the previous appointment he noted that I had already finally been brave enough to mention this to him before learning that the condition existed.

Believe me , when it happens it is still scary , but it is also relief to know that I'm not losing my mind , or that I haven't accidentally fallen down a fictitious Rabbit Hole.

No , merely just receiving another unwanted gift from the uninvited friend that keeps on giving - Professor Migraine.

And , on a positive note, it means I know the Pain is about to strike and I can prepare for it.

At least I am in good company , as , in case your interested , it appears that Lewis Carroll was a famous migraine sufferer whom was plagued by the same thing , hence the name.

Now , where is that giant green Bunny Rabbit I saw earlier!

Community Voices
MrsH

Go bag

Do any of you have a go bag? Or if not have you heard of a ‘go’ bag?

4 people are talking about this
Community Voices

Do you have significant gastrointestinal symptoms??

I was first diagnosed with gastroparesis and I notice my symptoms get worse after eating.

3 people are talking about this
Community Voices

Hopeless

I don’t blame anyone. I did this to myself. It’s my fault. Everything is my fault. I m sorry mom for not being the perfect daughter you’ve always wanted. I’ve lost control again and all my dreams are going away. #Depression #Anxiety #Selfblame #Selfharm #IfYouFeelHopeless #hopeless

45 people are talking about this

15 Ways You Can Support a Loved One With Fibromyalgia

A lot of the time when someone says they’re tired or that they have chronic pain, it can be hard for the people closest to them to take that seriously. Supportive and kind words from a loved one can greatly benefit someone who lives with a chronic condition like fibromyalgia. Unfortunately, it can be hard for someone who doesn’t have fibromyalgia to understand what the right thing to say is. Someone could have the best intentions in the world and still say something hurtful. Fibromyalgia is a condition that causes aches and pains, specifically in your muscles. It can cause a wide variety of other symptoms including fatigue and cognitive issues. Living with fibromyalgia can be difficult, but having a supportive loved one beside you can make tough days a bit more manageable. To help you and your loved ones communicate better, we asked The Mighty’s fibromyalgia community what they wished their family and friends would tell them more often. Here’s what our community wishes their loved ones said: 1. “That they believe me.” “‘I believe you’ would cover it. I’ve had Fibro for five years now and I still get, ‘She’s probably just being dramatic.’ This was said very recently, after a ridiculously long and hard journey where no-one believed me at all, doctors included. It hurt so much I cried for days because I thought my family was finally starting to understand I have a chronic illness, not just ‘making it up to get attention.’” – Lizo W. “I have blood relatives that don’t believe I have anything wrong, that fibro isn’t real, that I’m just lazy… Instead of thinking these things without learning about fibro, I wish they would say something like, ‘I don’t understand what having fibro is like. Could you tell me about it?’” – Jennifer B. “Definitely something like ‘I believe you, I care about your struggles, and I want to see you thrive.’ No one believes I have fibromyalgia, even though I’ve been diagnosed. I hear people’s eyes roll into the back of their head when I talk about it. It’s frustrating because I just want to be believed.” – Sydney D. 2. “That they know I’m not just being lazy.” “[I wish they said] ‘I understand that what you going through and you are not being lazy. I am proud of the effort you are making to make it through the day.’” – @smo2 3. “That they’re there for me.” “I wish they would say, ‘Hey you’re handling this well, I know this is ridiculously overwhelming and I’m glad you’re staying positive, but when you get overwhelmed, I’m here.’” – @dragonfly “[I wish they would say that it’s okay. ‘I know you’re struggling. I know you’re doing the best you can, I’m proud of you and I’m here to support you.’” – Aimee L. 4. “That they’re bringing me food.” “I love to hear, ‘I can help you do that,’ or ‘I can drop off food for you so you don’t have to cook.’ It shows they understand how hard the little everyday things can be. And let’s face it, we need to eat and cooking is a load of work when fibro has kicked up. So that little gesture speaks volumes of love.” – Kim S. 5. “That we can still spend time together.” “‘You can’t make it tonight? No problem. How about I bring over dinner and we watch a movie?’ I miss my social life, but I rarely bother making plans because I’ve had to cancel so often and people get so mad. I would love for a low-maintenance friend or family member to come keep me company when I don’t feel up to going out.” – @alaskancourtney “[I wish they would say I’m] invited or informed of family events or special events with friends. That someone would just text or call and ask me what they could do to help me attend the family event or special occasion. Since I have not been able to attend so many events with family and friends, the calls just don’t come and when I find out the event happened, it feels like I am no longer welcomed. It hurts deeply. I know it is my fault for being sickly and not knowing how to communicate to others that I still wish to be invited.” – @vindicatedplum 6. “That they’ll handle things for me.” “‘Let’s just take it easy today,’ or ‘I’ve got this.’ Often times I find myself trying to do something that takes too much out of me on a hard day. Things for someone else, just to make them smile, or things that just need to get done. It would be great if when my family or friends saw me struggling to do something, they recognized it and tried to make it easier.” – Pamela T. 7. “What they can do to help.” “I’m sorry you’re having a bad day. Can I help?” – Diane F. “I’m sorry you’re going through this; feel free to ask for help.” – Jeannette D. 8. “That they know I’m trying.” “That they admire how hard I try, how much I do and that I never give up, despite my chronic illness.” – @lizzieliveshere “It would be really helpful to hear that they know how difficult each day is for me and that they are proud of me for still pushing through.” – @sommerc “I wish my loved ones would recognize the strength it takes to live every minute with this disease. I wish they can realize that it’s through strength and determination that I function as well as I do and am able to smile, laugh and be the person I am around them, that it is hard for them to ‘understand’ a disease that SO MANY are still just learning.” – @relisham 9. “That I don’t have to push myself.” “[I wish they said] that they understand and believe me when I say I can’t do anymore and not be told to push myself more or force myself to keep going.” – Jeannine C. 10. “That they don’t mind taking care of me.” “What I need to hear especially on my real bad days when I can hardly even get out of bed is for someone to tell me they love me, they are here for me to take care of me and do what needs to be done until I feel better, just rest and not worry about a thing! That would be the greatest gift because stress and worry make fibro flare-ups even worse. I used to try and fight the tiredness and pain with all I had, but it keeps getting worse and worse. Now my body will just about shut down! I have no choice but to stop and go to bed no matter what is going on or what I might miss out on! No one understands and some just call you lazy and that hurts deep!” – Nikki E. 11. “That they’ll make that phone call for me.” “Even though my family is extremely understanding of me being in pain all the time and not always able to get the housework done, sometimes I would like to hear, ‘You know what, I’ll make that phone call.’ Instead of, ‘Will you call this place for me? Your home all day you have time.’ I absolutely hate making phone calls. I sometimes forget who I’m calling or why and I feel like I have to scramble to figure out what I’m doing. It’s hard enough for me to remember to make my own phone calls for various doctor’s offices, and I make calls for them too and I just wish sometimes they would just make their own calls. It can be so nerve-wracking.” – Krystine S. 12. “That I’m still important.” “I am not going to dismiss you because you cannot be as active as you used to be. You are just as important as you ever were. We love you and believe in you.” – @shellylcooke 13. “That they’re coming to visit me.” “I live alone and am divorced with two adult children. I have one brother who lives in another country. I wish my loved ones (children) would say, ‘I’m coming to see you so you know you’re not alone and that I love you.’ I wish my brother would say, ‘I’m coming back to live close by so we can see each other a lot. I love you sis.’ I’m crying just thinking about it because this crippling illness is so isolating. I feel so alone.” – Colette R. 14. “That they’ll speak up for me.” “I wish someone would advocate for me. Some of my friends are incredible. They support me even if they don’t completely understand. I’ve had fibromyalgia for decades. Just once I wish someone would say, ‘Leave her alone. She can’t control it.’” – @msgbird816 15. “That it’s OK to be myself.” “‘You don’t have to pretend to be okay.’ No matter where I go or who I’m with, I hide my pain to make THEM feel better. I’ve found that my being in pain makes other people more uncomfortable than not, so I put on a cheery face and put all my energy into seeming fine. I often pay for it at least for a day after, if not longer. I’d love to spend time with someone other than my husband who could say, ‘You don’t have to pretend.’ And mean it, and just accept me as I am, even if it’s not my ‘usual’ cheerful self.” – Allie H. If you are struggling to feel heard, please reach out to someone you trust. There are support resources available. You can also join The Mighty’s fibromyalgia community and share your experience. You are not alone. Here are some helpful articles from our fibromyalgia community: 14 Photos That Show the Reality of Parenting With Fibromyalgia Dear Friends, From Your Friend With Fibro 20 Gifts to Give a Friend With Fibromyalgia 11 ‘Taboo’ Symptoms of Fibromyalgia