I am in so much pain today. My mental health is taking a hit too. I have no one to vent to since I’m the “therapist” or “sunshine energy” friend, and no one wants to hear about my issues. They’ve shown me that… I feel alone at the moment. I try so hard to keep up my bubbly and optimistic persona, but it’s hard today… it’s hard to smile genuinely. It’s hard even to think that this will get better. I’ve been in a full-blown lupus flare for two years, which has caused my health to decline rapidly. I’m a very independent person, so losing my independence slowly is fucking with me. I’m on the verge of a breakdown. I just want the pain the stop…I want to stop feeling so tired and weak…I just want it all to stop.
I like to have this saved in my phone so I can show friends, family, or random people who are curious to understand the spoon theory and for them to get a better understanding of what we have to do/think about every day.
Accepting your limitations when you have a chronic illness or disability doesn’t mean you’re lazy or pessimistic. It’s more than ok to acknowledge and respect the fact that there are things you just can’t do. Don’t listen to anyone who tries to put you down or make you feel guilty for saying “no” when you aren’t able to do something.
4 years ago, I was sleeping about 4 hours every night. Many of my closest friends at the time had, or were in the process of, leaving me and I would cry from the loneliness. I was fighting with my parents and wanted to leave home. They thought I was exaggerating and attention-seeking. Every appointment ended with “we can’t help you” or “there’s nothing wrong with you” or medications that made me worse, to put it lightly. More than once I wanted to end it
This morning, I woke up after sleeping for 9 hours in a room built by my dad specially for me, so I would have a space for me if I stay at home longer because of my health. I texted my best friend who yesterday asked me to be her bridesmaid. Before asking me, she spent weeks making sure it would all be accessible and fun for me, not stressful. My mum brought my medication in for me, ones that actually make me feel better, and asked how I was feeling. Later I’ll text one of the members of my lovely and amazingly supportive medical team to see when we can video call. We always have tea when we call, and cookies or a cupcake- food doesn’t scare me so much anymore. Every appointment ends with “you’re doing so well”. I haven’t hurt myself in years, I actually stopped counting, and when it all gets too much I know I have people I can talk to and strategies prepared to get through it and it will pass. Life is still hard. But it keeps moving, and I’m so grateful.
I don’t know who needs to hear this, but it will be ok. It might not be now, and I don’t know when it will be, but it will be. It doesn’t all happen at once. Things are still hard. But one day you’ll wake up and be so glad you didn’t leave, because you would have missed these moments of happiness and love, and some of them-probably more than you realise- wouldn’t have been possible without you.
This week for the first time in a while, I think I may be having some relapse of my PTSD symptoms.
I’ve been finding myself zoning out. Thinking about time spent in the hospital. Worrying about things going wrong. But it’s more than normal worrying.
My husband and I are are trying to have a child using a gestational surrogate (my AMAZING sister-in-law who offered to do it for us without us ever THINKING to ask) and it’s going well so far. This week we picked an egg donor, hopefully. But I’m finding myself zoning out (maybe disassociating a little) and just letting myself get terrified. Like, what if I get sick. What if I can’t be there. What if I suck as a parent. What if I fuck up my kid. And on and on in a merry-go-round.
It’s not that we haven’t planned for these things. We have a great support network and I’m good with kids! But that doesn’t stop me from being terrified.
It doesn’t help that I’ve had a couple rough patches this month and now I’m probably going to run out of pain medication a bit early before my refill….which means I’m pre-emptively worrying about that.
Oh, and my aunt had to have an ostomy surgery this week because her worsening cancer caused an issue with her intestines and I’m kind of being her support now. And my uncle (not the one who was married to that aunt, but his twin) apparently slipped into a coma this week and may die very soon. So none of that is helping either.
I know this isn’t universal for most illnesses, but for me, I find myself in this situation far too often.
The most common reason for being hungry and not being able to eat is that you’re in too much pain to go get something, the thing you have to eat takes too much effort, or you would have to shop/cook which you don’t have the energy for.
There is very few things as frustrating as being starving and not having the energy or spoons to go get food. Then you end up in a loop because in order to get the energy to go get food, you need to eat something. It can cause you to spend several hours waiting for pain waves to pass or hoping the impromptu nap will give you what you need to get up.
The other reason this can happen is that your stomach just decides to screw you and even though it is obviously upset, you still feel hungry. So you start the gamble on,
“Is my stomach hurting because I’m hungry so food will help? Or will this food completely wreck my stomach even more?”
I know this isn’t universal for most illnesses, but for me, I find myself in this situation far too often.
The most common reason for being hungry and not being able to eat is that you’re in too much pain to go get something, the thing you have to eat takes too much effort, or you would have to shop/cook which you don’t have the energy for.
There is very few things as frustrating as being starving and not having the energy or spoons to go get food. Then you end up in a loop because in order to get the energy to go get food, you need to eat something. It can cause you to spend several hours waiting for pain waves to pass or hoping the impromptu nap will give you what you need to get up.
The other reason this can happen is that your stomach just decides to screw you and even though it is obviously upset, you still feel hungry. So you start the gamble on,
“Is my stomach hurting because I’m hungry so food will help? Or will this food completely wreck my stomach even more?”
[Image description under the cut…and really it’s just gonna be the text that’s in the images because this comic is LONG and I am very tired.]
In honor of Dysautonomia Awareness Month, I decided to redraw my VERY FIRST COMIC from all the way back in 2015. This one took an exceptionally long time–and then I completely forgot to post it here. Whoops. (I tend to post them on InstagramandFacebook first, so check those out if you wanna see my comics sooner since my brain is perpetually foggy and forgetful.)
I also turned this one into a video that you can check out on my Youtube channel. I’ll post it here later…if I remember.
Thanks for all of your support, everyone–and thanks for raising so much awareness with me!
It turns out that the face pain I’ve been having is something called trigeminal neuralgia. It had become more frequent so I finally went to the doctors. It isn’t necessarily to do with MS or the treatment, but it is VERY common in MSers. At the moment I’m not taking anything for it but we’ll see a couple of weeks from now.
I just thought I’d write a quick update, I suppose this one is more for me (so I have a chance of remembering)…
On 3 or 4 separate occasions (including my birthday) I had a HORRIBLE pain down the right side of my face. The longest ‘attack’ lasted on/off for about 1.5 hours, but it would appear that rotating the skin near my temples helped disperse it, but not always completely. Like this:
I’ve also had a bit more trouble with my legs and back. Stiffness & pain have been an issue for over a year now, but it was ‘getting better’. I’m not sure if it’s worse than it was, or I that I had gotten so use to not having the problem that having them back just feels worse. I am waking up with some stiffness now which is definitely new (it used to ‘disappear’ overnight).
My memory seems to have gone downhill a bit too, but that was rubbish to start with, MS aside… The fatigue is also a big problem, but I think that’s probably pretty normal to be fair.
My consultant did say that things might have to go down hill a little before getting better. I’m always being reminded that Lemtrada isn’t a quick fix and believe me, I know it!
I had my first successful Facetime urine dipstick test today! This might seem like a strange thing to be excited about, but my phone wouldn’t work last month so getting the test done ended with me going to my local minor injuries department just to be able to get it done - what a palaver!
Just in case you’re wondering….
I was given a bottle of dipsticks and a print out of the chart to compare my results with. My MS specialist nurse then contacts me via video chat so she can see the results herself too. I do the test and compare the results, telling my nurse (Bernie) what I think they are.
I’m pretty used to doing this type of thing as I have a similar test for the water in my fish tank, so this works quite well. Also, it save at least 2 hours driving/missing work/money so is a great way to do this test!
Luckily the second round of antivirals worked it’s magic and I’ve been shingle free for a while now. There’s also been nothing new to report and I haven’t heard anything about the results of my blood tests/etc. which I’m hoping is a good sign!
Still very fatigued, but coping well apart from that.
I’m back on the anti-virals again as it would appear I have shingles - poo. I actually feel ok to be honest, but where the little scabs are is very sore to the touch and a little itchy. I noticed 5 tiny little see-through blister things in a line on the right side of my tummy which were very painful to touch. We didn’t know what they were so ‘burst’ them (they were tiny so this didn’t take too much effort), but this morning they were still on the painful side so decided to call the out of hours doctor (darn bank holidays). I’m now on 800mg of aciclovir 5 times a day for 7 days. What a way to spend a lovely sunny day! Haha
I had my first check up since treatment. Went to the hospital an hour early, as instructed by my neuro, to have bloods done. There was an hour delay (nothing new there haha) so thought my results would definitely be there for my actual appointment…I was wrong! So I’m not entirely sure how my immune system is doing, or what my t-cell count is, but I haven’t heard anything from my neuro team since, so I’m thinking the results couldn’t have been that bad.
On the plus side I got to catch up with Mark and compare how we were. Whilst in the waiting room met a guy that had just finished Lemtrada (so 5 years on) who was kind enough to answer all the questions I kept on throwing at him. We also had a laugh at how warped our humour has become since being diagnosed with MS, something which hadn’t occured to me before that, but I suppose its par for the course.
Oh, and I was taught how to read a urine dipstick test, so there’s that…
Symptom udate: I am still having headaches which neuro says sound like migraines (which I have had in the past). Still VERY tired, possibly less over the last week, but could be that I’m just getting used to this level. My memory and (spoken) word recall seems to be getting worse and the ability to properly concentrate seems to have stopped for the time being. Altered sensation here and there with a bit of stiffness in my limbs - mainly left side (all happened before treatment too). On a good note, I have finally gotten rid if the cold I had (yay!).
Me: I have tried and tested my physical boundaries for 15 years, I know what I can and can’t do. I’m not a school child any more, nobody can force me to actively and knowingly hurt myself. CripplePunk4eva it’s a revolution I suppose.
Also me: Pain is temporary, the social repercussions of not keeping up and doing your part are not. Sure I can carry that thing as well :)
I’ve been to the hospital many times, and I’ve had bad nurses and doctors and good nurses and doctors. My recent overnight stint had pretty decent doctors and nurses. As patients we will certainly remember the more unpleasant experiences and be rightly angry about them.
However it’s important to remember that not all nurses are the bully from school. Many are genuinely nice and caring people, like my aunt who was a maternity ward nurse for many years. Many of these people are put under pressure of a for-profit medical system that forces more patients on less nurses. We should be outraged at genuinely cruel medical professionals, but if we want to be acknowledged as human too, we should do the same for them and advocate for better working conditions for nurses.
Yeah they’re supposed to be professional and not be rude but is anyone truly perfect at the end of a double shift with double the work? And some nurses are disabled too. I’m not against venting against terrible nurses but when we act like the problem is just the wrong people going into nursing we ignore a large problem about the state of nursing jobs and overworked underpaid caregivers that ultimately hurts and potentially kills us. I personally don’t want to do that.
I had some GREAT nurses when I was in for my colonoscopy. After, in recovery, my nurse went so far as to spend 10 minutes using alcohol wipes to gently remove my IV bandage, because I told her it rips my skin because of my fragile EDS skin. Did she have to do that? No. Did she have other stuff to do? Yes. Did I really appreciate it? SO MUCH YES
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
What the literal fuck is this nonsense? Who let this bitch practice medicine? Did anyone think to suggest putting some fucking medical evidence in this piece?
Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.
