That moment when you’re the youngest person on the train having a seat and everybody stares at you to get up and let that nice old lady sit down and you’re just like… Sure, of course… Just wait… A second… Give me… One second…
I gotta return my rollator to the physiotherapy tomorrow… And then I’ll have to wait for them to make the decision if I’m worthy of it lol. Not excited at all, I don’t miss my legs failing at all…
Everyone’s body, pain, illness, is different. Some things work for those that doesn’t work for others. There is no right or wrong way to live with it.
On this episode of chronic illness -
Chronically ill patients are not the patients you can pull a fast one on. They definitely know more about their body and quite likely know more about their disease(s) than you do.
Je suis quand même ultra heureuse d'annoncer que ma fatigue chronique (diagnostiqué par un médecin oui, je vous voie venir…) Causé par mes multiples infections rénale/urinaire est enfin presque finis après plus d'un an de bataille !!!
May has nearly ended, making it the last day of Ehlers Danlos Syndrome Awareness month (although, let’s be honest, the only thing on anybody’s mind right now is Coronavirus!) - so here is my two cents worth, my update of how it is affecting me currently!
First to report, if I compare myself to a year ago, it is really easy to see how far I have come. Of course, my condition will always be there and affects me still, but not quite as consistently bad as it was this time last year.
This time last year I wouldn’t go anywhere without my knee and ankle supports, my hand splints, my neck wrap that heats up, to help with pain, my TENs machine, pain killers. Last summer I went on holiday with my best friend and, although I LOVED the holiday, I could barely eat due to such severe reflux and nausea, and even on nights out I was wearing various supports/splints.
Now, in 2020 - my symptoms appear to go in phases more than they did last year. Last year my symptoms were consistently present, every day I had pain, dizziness and extreme fatigue that led me to miss most afternoons, I had dislocations and subluxations most days, I had many unexplained injuries, and struggled with food most days. Thankfully this is no longer current!
Now, I have some days with little to no pain, that was unheard of last year!
Often, when I do have pain, it is manageable with ibuprofen and paracetamol most of the time (as well as my regular gabapentin and amitriptyline). Awesome!
Usually when I have pain, it is in one or two joints at a time only (the joints remain my thumbs, wrists, elbows, shoulders, neck, jaw, knees and hips) as opposed to multiple, which makes it easier to get on with the day.
I no longer carry all my different supports and splints with me, only my thumb support! I no longer wear kinesiology tape on a regular basis, I rarely need my TENs machine or hot water bottle for pain management, and I rarely have full dislocations at the moment (although my thumb does still sublux daily).
i do still really struggle with the chronic debilitating fatigue caused by pain, although my pain tends to be lower level than previously, it is still present on the vast majority of days. I need sleep, and often, such as following meals, sleep takes me for many hours even when I have other things I need to be doing. I still suffer with dizziness, but generally there is a more predictable pattern; that week every month, and when it is hot outside. I still suffer with reflux, that is the only point that has not eased at all, and I hate it as my appetite remains minuscule and I wish I could enjoy food more without worrying about the frequent mini-vomits after.
I think in the past year I have learned a lot more about what affects my symptoms on a daily basis. Although I will always have some base level of pain, and I will always have fluctuating symptoms that make some days easy and somedays incredibly difficult, I have definitely noticed that when my anxiety is high (thanks, coronavirus) that my pain also increases, and cannot and does not reduce again until I am more stress-free and less tense. I have noticed how big of an impact my shift pattern can have on my pain and chronic fatigue, and thankfully new recommendations have come in from Occupational Health so that will help, and I have noticed how much certain actions (holding my tooth brush too tightly, writing a lot, giving blended diets via gastrostomies) causes increased subluxations and dislocations, so I can try to reduce how often I do these, or change my technique. I have noticed how much over-doing it one day has an impact the following few days - although I still need to work at not doing this, or choosing my moments more wisely.
I am learning about chronic pain to better understand my condition, and I am learning about self-compassion to help me be kinder to myself when my symptoms flare (because I can be very cruel to myself). I am doing my physiotherapy exercises more. I am resting when I need it and trying not to beat myself up about it. I am trying to better manage my emotional wellbeing, to try to avoid the inevitable escalation of symptoms when I do become anxious, stressed or have low mood.
Now my symptoms appear to fluctuate in phases more than they did last year; a few days to a week of bad symptoms and then they ease again usually, I find I am more positive about it and less fixated on pain or dislocations, because I know it will ease again. That has made a HUGE different to how I cope.
Hypermobile Ehlers Danlos Syndrome will always affect my daily life, but as opposed to last year, I know longer feel like it is consistently getting worse - in fact, I feel I understand it and have a little more control of my symptom management through my own actions and my own emotional wellbeing. This is a massive relief.
Fibromyalgia is a Chronic Condition
I’ve been missing so much work because my body is throwing a tantrum. I’m worried about losing my medical insurance through work because of it and my bills. I’m just waiting for the Rheumatologist to call me.
Everything hurts, I can’t even stand, dizzy, so tired. Stressed..
We feel like we have to project this image of disabled and chronically ill people being so brave. Like they’re such heroes because of everything they go through without complaining. And it’s true that we’re cool, but sometimes I’m sick of it. Sometimes I don’t want to be seen as someone brave or tough, even by myself. I cried for hours today because the pain just got so bad, and afterwards I found myself apologising to my family. Screw that. Why was that my first reaction? I want it to be okay for me to have days when I’ve had enough of it, to just cry and be sad and angry and frustrated because it’s not bloody fair. To not constantly worry that I’m a burden to everyone around me. Sure, I like making people smile, I think it’s good to be sunshine when you can’t find any, but I’m sick of insisting it’s not raining. I like to inspire people and do good where I can, but I am not your inspiration. That’s not my sole purpose. I didn’t choose this. I don’t owe it to anyone to turn this into some kind of origin story. Some days I just need to frickin survive and know it’s ok to not be ok and cry without apologising for it and be mad without feeling guilty because this is not my fault
PSA FOR ABLED PEOPLE
Especially if you’re around disabled people.
First of all, thank you for sticking with us, not all of you can do the human thing and just stay with us. This post is just to educate some of you to some stuff you might not have considered.
When we open up to you about our struggle about chronic illness/pain/fatigue, it’s an incredible proof of trust. If we chose to talk to you openly abut that, with no shade, without putting a mask, we have a tremendous trust in you.
Us, no matter if we are visibly disabled or not (hello fellow firbo warriors, EDS, chronicly depressed and similar battles), we’re always told we complain too much, we could do more and / or better. We’re told we should be quiet, because we’re a burden on society. We should be happy stores are putting special efforts into accessibility, even if it’s not enough… So if we chose to open up to you, it’s because we have faith you won’t be one those people who minimise what we’re going through. Please, listen to us. Please don’t tell you understand or that you’re getting it. We know, in the heart of our heart you don’t mean bad when you say that. But what you are doing by telling your sympathy like that is just distancing you from us by telling yourself you showed empathy. You say that more for you than for us. It’s okay, we get it, you mean well. But, the truth is, you don’t. By saying that you compare your normal experience of a back injury, feeling a bit blue or sore to our chronic state that prevent us from doing the heck we want to do. The back injury that put you in bed for twenty days is not the same thing as our constant state of pain (24/7/365) for years. Feeling blue a few weeks doesn’t equal years of chemical imbalance in our brain.
I’m not actually judging you, I’m just putting things in perspective so you know why it’s hurtful and why your disabled friend might not response the way you’d like them too.
Want to know what to do? Ask them.
In my case, I often just want to talk without my counterpart trying to relate like I said above, just, let me talk and tell you how I feel, I don’t care if you can relate or not, I just need to vent to someone. Or I’ll want a hug. Because, and I can’t stress that enough, hugs and hair strokes are the best things in the world in my books. They can help me relax a big deal.
But there are more practical ways to help! Offer your friend to do their groceries, to help them clean their home or to cook them something for a few days!
Sometimes we’re just too… Too much, we can’t even make it out of the bed, so knowing that someone is willing to actually HELP instead of empty words, is a tremendous chance! It’s such a relief! Even if it’s just coming to our place to do nothing but literally Netflix and chill.
The first time a friend actually asked me what I needed and offer to go buy me food, or do my laundry, I broke into tears.
You can’t cook? You’re far away? One my friend ordered me food online and had delivered to my doorstep.
You’re far away and you can’t afford the meal? Listen. Just give your time by letting us pour our hearts into your ears.
Some people don’t like being touched, some people don’t like other touching their stuff. ALWAYS ASK before doing anything. We’re already silenced by all, don’t ignore your friend as well.
It’s easy to offer help to your disabled friend / relative / partner / crush, just go with communication WITH them about what THEY need and not with what you’re assuming they need.
Thanks, see you later.
It’s been a while since I’ve had such an honest conversation with my mom as tonight. And I cannot properly express how good it felt. See over the years we haven’t been very close. Then I became sick and she put in some real effort in to show her support. And when I went on sick-leave last year, it got even better. For some reason my mom is getting better at speaking about her feelings and mine. Neither of us ever gave up trying and it feels like we’re finally getting there. And all I had to do was get really sick ;)
Anyway back to the talk.
It started off so silly. I was joking about my inability to go slow on my bike. All my life I loved riding a bicycle. I was never really gifted at sports, but on a bike I was fast. Fastest in my class, which is important when you’re ten—not so much when your older. Through the years the social importance disappeared. But I still liked being fast. I rode an hour a day, five days a week at least. It helped me clear my head, calmed me, kept me somewhat fit.
Over recent years my lack of energy caused my to become slower and slower. And since my surgery, riding has been much rarer still. I knew it would take some time to recover. Thanks to corona the recovery was made more difficult. Suddenly I didn’t need to get into work twice a week to build up my hours(this is a good distance to keep your endurance up) And I didn’t need to go to the hospital as often. Slowly but surely, quarantine has made me even slower.
And until my joke, to which my mom gently said that I should accept that I need to step back, I didn’t even really understand how I felt about it. The idea that I need to go anywhere further than 20 minutes makes me uneasy now. Because I cannot go slow for some reason, I push myself and I end up exhausted and sweaty—not how you want to greet your friends or colleagues. She suggested I just take my time and I realised that this is such a foreign subject to me. It’s insane really. Why would it be?
There is no shame in taking a step back. And nobody expects me to push myself. Only I do.
To say it shortly, I’m really getting tired of doctor’s crap. Guess who’s getting tested for Lyme disease –_–
To all my followers, ppl reblogging my stuff, and the very nice ppl I texted with in the past few days: I appreciate all of you and the contact we’ve had is of great value to me! I tried tumblr two times before a few years back, but I was more into the fandom stuff and I always had the feeling that ppl on tumblr don’t care abt one another… But this time, my experience is very different and truly amazing. I’ve only been here a few days now, but I feel so at home and so accepted - a feeling I rarely have in real life. Since I know that most of you are struggling as well: Please know that I’m here for all of you! No matter what you have to say, please reach out to me! To be in contact with ppl is really important even if it’s only online. You’re all great ppl and trying to do your best to cope, to exist, to not give up. And that’s enough! Don’t forget that! 💙
So there’s a reason why I haven’t been posting as much on here lately ☺️💕
We have our own little miracle due 10.12.20 😍
I feel like death.
I’m sick of living with constant pain, illness and no life.
How can I be strong when I feel so weak ?
Chronic pain problems •