Rain - late 20s - he/him/it/its - I've made another sideblog focusing on health stuff. It's easier for me to be candid about things when I have a separate space :-)
Hello, this is a draft of my pinned post. When I have the energy I will edit it and add more information about this blog.
This is a side blog I have made to post about my chronic health stuff, and connect to other people and talk. I mention mental health and adhd too. Also I reblog other people's posts!
I'm often slow to reply to messages and comments! I love talking to people on here, but sometimes I can't reply quickly and it may take days to get back to you.!
My main is @strangegreen where I reblog nature related images and videos, that blog is where I follow and like from. My most used side that is for the usual tumblr fare of funny / interesting / cool images, textposts and videos is @parakeetpark . On that side I often reblog things that I think are 'funnier if you're bedbound' so i started a tag... #fiybb on there to express that without being obvious. I'm usually quite active on those blogs because I use queues!
If you follow from one of my other blogs and stumbled across this blog: you are welcome to interact and follow here too if you'd like! I meant in my description that I want this to be a separate space in terms of my own posting, not separate from people from my other blogs :-)
Visual input can be difficult. So, I'm going to tag any pictures on this blog with "#image" in case anyone wants to filter them out. But, this blog will be almost entirely text posts. And longer text posts will be tagged with "#long post"
It’s okay to be sad about or grieve the opportunities you miss out on/cannot take due to your health no matter how much you want them. It sucks and it can be heavy and it’s not your fault. You cannot will power your way out of it, it’s a disability because it is disabling. And that can hurt a lot. In a way it’s not an opportunity if you cannot take it, it’s a magical and unrealistic “what if” but they still hurt. So I’m here to tell you and myself that it is okay to be sad, it’s also okay if some people don’t get your limits. You are the one living your life, and I hope true and joyful opportunities are on the way to all who wants and needs them. 🌸
I've been really worried about this very big flare-up lasting for months. But, after three weeks it seems to be ending.
Managing to sit upright for short periods a little more easier each day :-) . I'm working hard to not overdo it in my excitement and keeping careful track for any changes, but this is nice! I was able to safely eat sitting upright at an acceptable heart bpm TWICE yesterday for the first time in ages :D
People who give the "just stay off the screens" advice for migraine genuinely underestimate both the possible duration of a migraine and the amount of things you can reasonably do with a migraine.
I've had attacks every day for over a week now. I've been ironing (on low heat, so I don't accidentally destroy my clothes) and organizing my closet, but even that makes my migraine worse if I do it for too long, because of the physical movement. I also can't go outside much because both physical activity and loud spaces make my migraine worse. I can't travel by public transport or car for too long much because of the nausea.
I can't read a book because I can't concentrate that well and my short-term memory is bad, so I'll read the words and not actually comprehend anything.
I can't listen to music on my headphones too long because the migraine makes wearing them painful.
And anything where my mind wanders too much, I won't be able to do because eventually all I'll be able to think about is the pain.
I have medication-resistant chronic migraines that can sometimes go on for weeks. I genuinely don't have many options as to how to spend my time. If it wasn't for the internet, I very likely wouldn't be around anymore, or I'd have a serious drug addiction, because you'll try to escape the pain somehow. I wish it was that simple, I really do. Being able to just put down my phone and go do things and enjoy life sounds great right now.
So exhausted, too many bad nights of sleep. Migraine last night until afternoon. I keep yawning but can't sleep. For some reason kept visualising bad stuff like ticks in legs, like the insect, while trying to nap?? But too tired to do anything and keep loosing trains of thought or repeating. So just going to float. This is how i feel in heatwaves too.
I'm going to do as many things I know help me sleep tonight as I can. Drastic measures! Chamomile tea, sleep oil with lavender and such, few mins audiobook or music, pain relief med (keep forgetting to do this before bed),... uhh anything else i remember 😄
I don't know who needs to hear this today, but here it is: you're not lazy.
When you're living with a disability, chronic illness, or chronic pain, everything takes energy, and on some days, it's energy that you simply don't have, because your body constantly has to work overtime for your survival.
As I'm currently smack dab in the middle of a flare-up, bronchitis, and the side effects of my new prescription pain medication, having spent this week so far on my couch watching guilty pleasure TV, I'm here to remind you: you're not lazy. You're sick, or in pain, or disabled, and none of it makes you a lazy person.
For some reason I have been replying to things the wrong way around. Doing them opposite to my plan to do and have been replying to Newer ones first instead of Older ones 😅😭. Can't remember when I started... But i appear to have replied to all things from the last four days so that's a safe bet for when I got my wires crossed.
Often I get my own habits confused, and I think it's to do with adhd. It's not on any official thing I've read. But it seems like adhd things are relevant like: not forming habits like others do and the forgetfulness.
If I didn't know I did this sort of thing my whole life I would blame brainfog. But this is just my usual brain. Completely forgetting or doing the opposite of my usual approach to regular tasks used to happen a lot when I studied unless I wrote plans down 😄.
Made a comic abt my experience with my severe chronic illness (myalgic encephalomyelitis) which i drew horizontal with my fingers because I'm bedbound and spent a MONTH on it and posted it on every social media and it got no motion lol so just posting it here as well😭😭😭😭😭 I just wish hard work mattered I'm just trying to raise awareness
[ID: digitally illustrated comic person coming home with groceries and giving smoothie to person lying in bed. A dialogue between the two people reads “I’m home! Ugh, sorry it took so long. I stopped downtown for treats!”
”Ooh, did you go to yummy town?”
”What? No they closed ages ago. I got smoothies though.”
“Oh. … thank you.”
Captions on the comic read “The hardest part of all this, has been realizing just how much the outside world has changed since I’ve last been in it.” /end ID]
Last few weeks I have shared about how a neuro physio saw me for an assessment two weeks ago, and then called to say that she was referring me to a general physio instead.
Since I last posted about it, she called me again a week later unexpectedly and told me she would continue seeing me for 4 physio sessions after all. I don't know where this sudden change of decision came from.
I've been very worried about this appointment. So, I've been working on this draft for a week and a half. But, I have decided what I will do about this an hour ago. I am so relieved with my decision. I've decided to post it anyway, editing it to add my decision about the situation, because I want to share this. It's very long so under a readmore. It's legitimately like an essay despite my best efforts, so no pressure to read whatsoever!
This physio got me doing physical exercises during the assessment, even had me standing up even though when I saw up my pulse shot up to 136. And she saw that my pulse did not lower as she expected from sitting for 5m but still got me to stand up to take my blood pressure again. I've mentioned in previous posts she was very ignorant about ME/CFS. Also, the thing is... she didn't listen when I tried explain that when I push myself it always makes me worse. In retrospect I realise yes she nodded to what I said, but she didn't take it on board. Because I was clearly straining and she told me to continue and push myself through this.
Since two days after the appointment, I have been having a flare-up and have been worse than I have been in many months. All the progress I made seemed to be gone at first and that was a frightening prospect. I'm trying to very slowly recover. It has been really terrible because there has been a huge loss in what I am able to do and my independence again. Symptoms that haven't showed in months are back every day now.
I'm angry at her and I'm angry at myself. Because I knew pushing myself would make me worse!! I have been learning about pacing, gauging my own 'energy parcel', and doing things safely and carefully for months. I have been listening to what others with ME/CFS have said and it had helped extraordinarily!! And yet this happened.
I find it very hard to say no to medical professionals. I fold in the face of their power over me, and ability to affect my care. We all know their impression and opinions of you affect their decisions about care and they can communicate these things to other medical professionals. Leave notes that say you refused to do things or were argumentative for example. I told myself I wouldn't push it during that appointment even if I had to say no to her. Then I did the opposite because I got agreeable and fearful. Something about her tone that brooked no argument got me to do what she instructed. I have worked on this, but this was a new person I was seeing, and I am not in a good place for self assertion. Being bedbound really changes things. I had been more able to say no the past.
My loved one didn't cut in because she said she thought I seemed like I knew what I was doing, which is completely understandable because I did sound like that. It's not her fault in the slightest. We've talked about this and she better understands how I get very agreeable during appointments now, but I don't think relying on her to put a stop to things is right. That's a lot to expect of her.
Now we are at the point of the Physio calling again. When she called and said she would continue seeing me I was shocked to hear from her again. She wanted to book me for an appointment last week and asked if I was using the walking frame. I said I was having a flare-up and haven't been able to do the exercises she gave me or stand. She said in a disappointed and judgmental tone "Oh well when I see you I want to see you take a few steps with the walking frame." Horrifying. Dismissive. The tone that brooked no arguing against her again. So we booked it for this week instead. I've been dwelling on her judgment and the fact all she cared about was making me to stand and walk... pushing and pushing. Making progress that can be checked off on boxes it feels. In 4 sessions.
I've been stressing very much since then about the appointment... How could I make her listen and understand. How could I make her believe that just doing one or two exercises and taking breaks is the best. Get her to slow down despite her seeing last time I Can technically push myself to go fast. Been thinking about how she could hold the fact I'm not diagnosed over my head or that I've talked to other people online (which often medical professionals HATE. when you are anything except completely at their mercy and ignorant of your own body). How I could argue back that I've received instructions from the Autonomic Clinic about how I need to practice pacing, no matter my diagnosis stage. That this knowledge is actually from from a source she would find legitimate! (... and not the internet and the community I am so thankful to have had in the last months who have helped me learn these things in much greater detail than the bullet pointed instructions I received only a week ago from the Autonomic Clinic. The online support which I certainly would have continued declining without. I could be so much worse if I had left my care up to many unknown months of Nothing.) Side note, the fact I was so relieved to receive the instructions from the Autonomic Clinic because it gave me Evidence of Authority that I could use to reason with the physio... says a lot. She's given me no sign she will listen to me talking about my own body like I do know how it works, which is bad.
And I've come to the conclusion after all this that..... I cannot imagine any way that this Physio appointment will go well. She will get me standing, she will make me try walk, there's so much damage she can do to me and not blink, and say it is for good reason, and have no regrets when I get worse. I either get agreeable again, a habit I am working to stop doing, but she brought it out easily in me so I know she can do it again. Or I manage to hold my own and earn her ire and condemnation. Which will also be immensely stressful and that also equals exertion. And when I stopped and thought about how vulnerable I am right now... I accepted that I am not strong enough to hold my own at all... The appointment will go as she wants it to go like it did last time.
It all comes down to the fact I don't trust the physio. I do not trust her to not make me worse. She doesn't know about ME/CFS. She does not have my health in mind, just paperwork to fill showing she has done her job, even when it makes me worse, I'm just another figure. She didn't listen to me from my first meeting with her. I've only ever felt comfortable with a handful of medical professionals in my life, those that listened to me and showed they will not steamroll over me... and from my three interactions with her I have seen nothing that makes me confident in her or makes me trust her. All I feel is unease about her.
So... I have decided as of an hour ago to cancel the appointment. With only a day until it was supposed to happen. Each day as it crept closer I have felt increasing trepidation. I hoped it would stop and it hasn't. The immense relief I felt about cancelling it speaks volumes to me too... I don't know how... but I am going to ring and explain I am not in a good place for physio right now, because my symptoms are fluctuating so much. That it would be a waste of their time and resources to see me. And I will hope it doesn't get me marked down as 'bad patient'. But even if it does and I cannot use their services again or it affects things... It's better than getting worse again because of medical professionals who don't care to listen to me, gain my trust, or know about ME/CFS at all... I would rather keep managing myself, which had been genuinely helping me improve. And I have been so over the moon that I have been improving slowly, without treatment. I had so many improvements in my life!! Pacing has given me hope. Managing and learning from others. Until I get to talk to the specialist ME/CFS clinic... hopefully... and I will take it from there. I would rather continue this path.
You can't. And this is where it is helpful to have other people in the room because studies have shown that medical professionals are more willing to act on something if it is brought up as "so my grandma said" than "i have talked tohpeople with the exact same problems and concluded that". This is proven.
My condolences and my congratulations. You did a very good and big and brave thing, standing up for yourself like that and cancelling.
I've been in similar positions and have found it a good thing to be 40+ now because i genuinely say things like "i have been living in this body longer than you have known my name" and "no (without any further comment from me)".
I'm so sorry to hear that the physio has made you worse, and i can assure you that this reflection is true, i've seen it in my own teen back when they tried to force her to do therapies she wasnt ready for. My issue is that i am, like you, quickly agreeable to "professional experts", even when my gut tells me otherwise. It's better when i need to fend people off from kidteen, but i have very much the same problem - currently with my psychiatrist, whom i need for the adhd meds.
The realization that one is powerless against the medical staff can make things very emotionally hard. But it also helps, in a way, because it also has the conclusion that no matter what you do, they might not listen or care. So pleasing them is not necessary, because they decide wether they are pleased no matter your efforts. That gives freedom of choice and that empowers.
Standing up for yourself (pun not intended) has been a big step for you. And your body will thank you for it, because stress is one major factor in me/cfs. You have enough other things to worry about.
The fact that you and your loved one were able to talk is such a good thing! Maybe you could make something like a manual, a written script, with phrases to use between the two of you to check your wellbeing. I always agree on a phrase with kidteen before going into any appointment because your mum asking "is it alright if they touch you" for the gazillionthed time might be educational for the therapist but annoying for you.
We've had phrases like "is that okay for you" and "do you think it will be raining tomorrow" and anything in between. And kidteen and i find that it helps because it also creates the picture of her (as a patient) not being alone, us as a team and me as someone who actually watches what the therapist is doing. Which makes a HUGE difference. (Too many of them do not like being seen during their work because they know t at they are shitty.)
I hope you get to rest now, and then make a plan on how to tell this practice (not the specific person if you can), that and why you are cancelling. My advice there is: written. Write it and refuse to take calls from then on. Written communication only, because it's proof that you don't just "stop cooperating" or whatever. And if you need to explain it, just say that it's because you have to be mindful of your migraine, brainfrog and exhaustion levels. (Maybe "offer" to make calls but insist on recording for memory issue reasons. Or just inform them the moment you take the call. Works wonders with people who do not want to take responsibility for their own actions and just blame you for being "problematic").
Most importantly: you can be so proud of yourself for being so strong and brave. And I have no doubt that you will benefit from it, because, as you wrote yourself, you made good progress in getting better when left to your own tempo and such.
I hope you find someone who helps you get better, and i hope it will be a time with a lot of smiles and hope.
I don't have enough words right now, but I really want to reply because I really appreciate your addition here so much. And I don't want to keep waiting for a day I feel like I have the right words, I'll keep you waiting forever then :')
Thanks Krisrisk 😊🌠✨🌌💫!!! I've read this through three times and it means a lot. Your words ring true about many things, like it being easier when you're trying to support someone else than when dealing with your own appointments. And your advice has given me much to think about and try to apply, which I appreciate a lot. Today me and my loved one have been discussing your suggestion for phrases decided beforehand. Finally, thank you for your kind words throughout, and in the last two paragraphs 😊💙🫂!!!
Finally got around to moving some photos from my phone onto my external hard drive today. Phone has been at 'storage critically low' for about three weeks.
It was difficult seeing old memories, compounded by the fact they're from before I got bedbound. Some of the photos I saw were from when I was still very active. I knew it'd be tough so I asked my loved one to sit with me. It helped a lot because I was explaining things or we reminisced at times.
Got lost in memories I had completely forgotten. Regret for times I didn't take enough photos of people I cared about. Pride I had taken photos of mundane things that brought me joy. Unfortunately had to go through photos from when my father had just died. Saw old haunts I've moved away from and won't see again. Mixed memories, walks when I was extremely low at university but still had good moments to look back on. Photos from Christmas last year just before my health plunged dramatically, but when I could tell something was wrong.
It all feels a very long time ago now. It's very weird to surface from the memories and find myself back in my bedroom again. With the kind of grief from unpacking that things have passed being stronger this time.
At times I seemingly forget things entirely unless I'm prompted by something. It bothered me, until I learnt I had adhd and that the issue in adhd is recall. The memories are still there, just waiting to be recalled.
Anyway, I've had a life full of things and events it seems. And there will be more in future. I'll keep taking photos, even from my bedroom. Of moments. And I imagine when I look back on them in years time these photos will spark memories too, and I'll recall the good times easier with my photos.
A tip for anyone who deals with chronic stomach issues or chronic illnesses that affect your stomach, anyone who deals with nausea, indigestion, or the like:
I make popsicles and keep them on hand. Lemon juice + ginger, lemon juice + mint, chamomile tea + lemon juice (this one is also great for stress, cramps, or to have as a snack before bed). You can do all sorts of combinations using juices, herbs, teas, etc. Whatever works for you and your symptoms, give it a try. If you don't have popsicle sticks, you can make ice cubes with the same things and suck on the ice instead.
It's something I've done for years now, and it's so helpful and handy to just be able to grab a popsicle when my chronic illness issues mess with my stomach (I deal with a lot of nausea, pain, and not always being able to keep food down, personally). It's especially nice in the summer.
They're fantastic for stomach issues. You can also add sweeteners like sugar syrups, honey, or similar, just be sure to research how your preferred sweetener freezes and holds up in the freezer.
Tiring to deal with inconsiderate, self-centered family members who intermittently contact you. Suddenly they have time so you're supossed to drop everything, like being chronically ill means you aren't busy. The weird guilt in their voices for the lack of contact and non apologies for it. Talk over you, and either not listen or disregard what you say. They want to fix your life, but do what they decide is helpful instead of listening to what you say would help. Then go back to not contacting to you, and casting aside your attempts to stay in contact. Until the next time they call with remorse and say the same things again.
Seeing them repeat the exact same behaviours with me that they did with my late father, who was also not well for a long time. That's the weird part of this. He didn't like it either. My father didn't often talk about things bothering him, but he talked with me about this. At the time, I suggested he tell them... but he said there was no point. Feels bad to be in the same cycle. But at least this tells me it's not to do with me, it's to do with their own issues.
Can we just take a second to acknowledge how absolutely traumatizing and terrifying it is to lose your health? Feeling yourself decline, not knowing if you'll get worse, but knowing the permanency of your new reality, is scary.
Often we don't hear about the fear that comes along with health decline. We are praised for being strong and for enduring so much. We try to keep going despite the terrifying feelings of knowing there is no going back from this. There's a lot of trauma we face, a lot of grieving, and a lot of repressed fears.
So I'm just here to say that these feelings are valid and you're not alone.
