bardichealing

[bardichealing]

18 months ago I was sitting sipping coffee when my back started hurting. Within 90 seconds I was on my knees in the hall screaming downstairs for my mum that something was seriously wrong.

I spent was an emergency admission and spent a week in the hospital having tests - very expensive X-rays, ultrasounds, an MRI to see why my gall bladder was manifesting pain that mimicked appendicitis (turns out it was producing toxic sludge). I had blood tests twice a day to check my liver profile because it was acting nuts. I had painkillers 4 times a day and three square meals a day. I had a second three day stay for my surgery to remove it (needed to wait for my liver to calm down).

All of this cost... not a penny. Neither does my ongoing treatment and visits to specialists for my hidradenitis suppurativa or fibromyalgia. I’m in Scotland so I don’t even have to pay for my prescriptions!

My sister’s pregnancies cost nothing. My fathers surgery to remove precancerous cells cost nothing. My mum’s histerectomy cost nothing. My granny’s quadruple heart bypass cost nothing. In exchange we pay a pittance extra in taxes.

I think we get the better end of the deal.

I get really confused when americans, when talking about universal health care are like ‘yeh but it’s not free sweaty :) :) you have to pay it through taxes :) so gotcha!!’

and I’m like ….???? That’s the whole point??? Everyone pays their fair share so that no one has to be turned away because they don’t have insurance??? And no one has to set up a Fundraiser page just so that they DONT DIE???? So people don’t put off going to the doctor because they’re scared of going bankrupt?? Because healthcare is a RIGHT and should be free at the point of access?!?

[bardichealing]

Little Things part 2

So for some reason my post ‘Little Things’ has been going around like crazy. Whatever, it’s not the worst thing I’ve written on this hellsite and the message is important. But it works the other way around, too. Little things can make life better, but they can also cause an awful lot of hurt.

Last week I had a real doozy of a fight with my family. My father, who does all the cooking, decided I’d put on too much weight and he would cut my meals down. Not great that he was doing it without discussing it with me, but generally reasonable since I’m not able to be as active and a side effect of my medication is weight gain.

Except he went too far.

My dad has never had a weight problem and has piled plates. My mum is actually trying to lose weight (having gained, I’d be satisfied just not gaining any more right now) and has smaller but reasonable portions - enough to leave her feeling like she’s eaten and doesn’t want to snack but not so much she ever feels nearly full. He started giving me portions a bit smaller than her and they started creeping down. Mum and I both spoke to him and told him portions the same or slightly smaller than hers would do. He got better at it.

Then last week he started rapidly decreasing them again until it came to a head on Thursday. He had a mountain of food, mum had a reasonable diet portion. I had three mouthfuls. He hadn’t even cooked less - just given himself the extra.

The most important point - this was my favourite meal.

I mean my absolute favourite. The one I would ask for if I needed to ask for a final meal. It’s a version of spaghetti carbonara that I have never seen made outside my family. Instead of a thin cream sauce, the spaghetti is boiled to al dente then everything - spaghetti, bacon, mushroom, onion, and egg - is all flash stir fried together. The spaghetti comes out coated in just barely scrambled egg and bacon grease. It’s decidedly unhealthy but it tastes So. Good. And he rarely makes it. We’re talking MAYBE three times a year. It’s a huge treat for me, especially given that he normally makes the same meals repetitively over a two or three week period.

I left the table in tears. Clearly this was an indication my father had judged me too fat to be allowed to eat. Having it be my favourite meal was just an added jab. I considered calling a cab to take me for a takeaway. I considered skipping lunch every day in a bid to lose weight faster. I considered stopping eating altogether. None of those were healthy thoughts. I know that and I didn’t act on them. But they were chasing round my head while my stomach ROARED that I had given it just enough food that it knew it was hungry.

Mum tried to come up and comfort me, but I wasn’t for it. She had nothing to apologise for and if she was here instead of him, it meant he didn’t think he had anything to apologise for. She shouted at me. I shouted back. She screamed at him. I screamed at him. He yelled back. Eventually I got an apology and a promise it wouldn’t happen again. And a promise we’d have carbonara again this week.

Dad is very rigid in his meal planning. Sunday’s are a roast, Monday’s are something (usually a curry) made with the leftovers of the roast, Tuesdays are meat, Wednesday’s are pasta; Thursday’s are leftovers from the freezer, Fridays are fish, and Saturday’s are a ready meal or takeaway so he’s not cooking. We only had pasta last Thursday because his usual Thursday evening meeting was swapped to Wednesday so we swapped leftovers and pasta. So I was sure tonight would be carbonara.

Nope. Haggis lasagna. Which was very nice. But it also means a broken promise. It means something I was looking forward to was taken away without warning.

When you’re chronically ill, you lose so much. Things you took for granted, you can no longer do. I’m not driving because I don’t trust my concentration and don’t want to cause an accident. I can’t concentrate to read a book or my friends fics. I can’t take my dogs long walks - I can’t even stay standing in a queue for long. So small pleasures, little treats, mean so much. And taking them away hurts more than it should.

I don’t know when I’ll have my spaghetti carbonara again. I’d say maybe my birthday, but it’s a Saturday so I’ll be lucky to be asked what kind of takeaway I want (Chinese, always). My mum turns 60 that week so it will be all about her that week anyway. I desperately want it. I’d cook it myself but just scrambling one egg for lunch for me drains me. Cooking a full meal for three people would be beyond me. And it won’t make up for the broken promise. If that didn’t matter, why would giving me portions enough to feel like I’d actually eaten a meal matter?

I know in my head that in the grand scheme of things it doesn’t matter and I have a lot to be grateful for, but it hurts. When you don’t feel you have much to look forward to, taking it away leaves you with nothing. And that’s the worst feeling of all.

[bardichealing]

Hidradenitis suppurativa is a chronic painful skin condition. Until I was diagnosed 18 months ago, I’d never heard of it. People don’t talk about it because it’s considered “disgusting” and there’s a misconception that people with it are “dirty” but actually it’s more to do with your immune system. There’s little medication for it other than long-term antibiotics and little research being done to improve treatment.

Tonight, I’m taking part in #bringHStolight We’re raising awareness of this horrible, misunderstood condition in order to challenge those misconceptions and encourage more research into it.

[bardichealing]

Two Rules

1. Don’t comment on my post with miracle home remedies. I’m a scientist. You think I haven’t seen a remedy/treatment that might help, show me the peer reviewed studies from reputable sources that demonstrate its potential and I’ll discuss it with my doctors.

2. Don’t come into my comments at all if you believe that homosexuality is a sin that God will punish you for.

[bardichealing]

*screaming* Can someone please explain to my dad that wearing supports and/or splints doesn't magically stop my bones hurting, especially within 60 secs of putting them on? Because he's not listening to me when I tell him

[bardichealing]

Last night I narrowed it down to lupus, fibromyalgia, or multiple sclerosis.

And the winner is...

Fibromyalgia

At least I have a name for it now

Spending my evening googling health conditions because my GP likes people to have turned to Dr Google before seeing her. Probably to tell them how wrong it is. Judging from my vague symptoms I could have anything from the flu to cancer and anything in between.

Anyone here have any ideas:

Fatigue

Brain fog

Poor memory

Poor concentration

Back pain

Joint pain on one side (ankle, knee, hip, and wrist)

Pins and needles

Intermittent tremor in hands

Did have lowered folic acid levels but those are back to normal after 8 weeks treatment.

[bardichealing]

Spending my evening googling health conditions because my GP likes people to have turned to Dr Google before seeing her. Probably to tell them how wrong it is. Judging from my vague symptoms I could have anything from the flu to cancer and anything in between.

Anyone here have any ideas:

Fatigue

Brain fog

Poor memory

Poor concentration

Back pain

Joint pain on one side (ankle, knee, hip, and wrist)

Pins and needles

Intermittent tremor in hands

Did have lowered folic acid levels but those are back to normal after 8 weeks treatment.

[bardichealing]

Just Because

I’ve been able to make it back to church over the last couple of weeks after a couple of months away because I was too ill. I’m still not participating fully because I don’t have to strength or energy, but it’s just nice to be out of the house and socialising. But yesterday I discovered just how little people understand about how chronic illness works.

Two separate people yesterday asked why I’m not better yet. One of them was a medical secretary so I would have thought she’d know better. They both wanted to know WHY my immune system wasn’t working the way it should, what I’d done to cause it since there clearly wasn’t a family history (my mum is a senior member of the church administration and very well known). If my doctors knew what was causing it and I was receiving treatment why wasn’t it working already. When I told the medical secretary that even if this first treatment was successful it would take months for it to be fully effective she asked “why can’t they speed it up?”

Around the time my health rapidly deteriorated, another church member had a total knee replacement. No one is asking her why she isn’t healing more quickly. And she will heal, slowly and in time. I will never fully heal. I’ll be on medication for life and I will always be subject to good days and bad days. And most people understand that. They appreciate what little I can do and are glad to see me when I can make it. But it makes me angry that some people just don’t even try to understand chronic illness. And the fact they want to blame me for it is heartbreaking.

I hope they learn. If nothing else, I want people to learn from my struggles. But if people don’t want to try… that’s hurtful.

[bardichealing]

Small Talk

“Hey. How are you?”

People ask that All. The. Fucking. Time. And when you’re chronically ill and your health’s deteriorated recently, it’s a loaded question.

The usual answer is, “fine, thanks. How are you?” I’m sick of it. So I’ve come up with a new response.

“Do you want the polite answer or the honest one? Because you can have one but you can’t have both.”

The responses are quite telling. People who do care usually laugh and then ask for the honest one. People who didn’t really care what you were going to say get a bit flustered.

I don’t do it all the time. With people who aren’t likely to have heard how ill I am, taxi drivers, and acquaintances I tend to go with, “I’ve not been too well recently, actually.” That tends to get a bit of sympathetic murmuring and then everyone moves on. And people who preface it with something like, “I know you’ve been sick,” or follow it with, “are you doing any better?” are already asking for the honest answer.

No one’s taken offence so far. I think I’ll keep it.

[bardichealing]

Little Things

I’ve begun to notice the little things people do or say that make a huge difference to me. They probably don’t even think about it how big an impact it has.

My aunt popping in for coffee and bringing me a nut- free chocolate bar “just because”. A little, cheap, unexpected pick-me-up means more than some grand gesture.

The friend who listens and asks questions about my medical treatments and stress with doctors. Sometimes these things feel like they’re taking over my life. Listening and being engaged in what I’m saying means I feel less boring and helps me work out what I need better than running over it on my head.

The lad who always makes sure to ask me if I want to join the group when they go out, even though I say no more often than I say yes. Being ill is so isolating without people forgetting to involve you. It means when I do feel better, I know there’s a social life to go back to.

The person who says “you really don’t look well, but I’m glad you came”. I know I don’t look great. I’ve put on weight, I’m pale, and I have huge dark circles under my eyes. Telling me I look “great” or “so much better” feels patronising. It’s nice when someone acknowledges I’m sick without it being an insult and appreciating the effort I’ve made to just leave the house, even just to sit in a chair and drink coffee.

These small gestures mean more than people know. They mean I’ll make the effort to try and do the limited things I can, rather than become a hermit. The help me from feeling less isolated. The little things matter. People should know that.

[bardichealing]

I think what non-spoonies tend to forget is that chronically ill people do not just get ill more often than other people, but are ill all the time. When we miss school or cancel appointments, it is not because we ‘felt a bit peaky again’ and decided to not go - we feel bad most of the time, but still do things anyway. A lot of us feel ill, in pain etc. all the time, and we cancel plans/take time off when we physically or emotionally cannot cope with the day or the things required of us. Our ‘good’ or ‘okay’ is a healthy person’s ‘awful’. We are consistently making more effort than ‘normal people’ in order to live and make a living, and we often make that effort at the expense of our health. And it is so hurtful and offensive when people we know/ friends/ family/ teachers etc. get frustrated and annoyed because they think we are not trying hard enough. We are always trying. We are always fighting. Sometimes it’s too much.

[bardichealing]

“If a person can’t get out of bed, something is making them exhausted. If a student isn’t writing papers, there’s some aspect of the assignment that they can’t do without help. If an employee misses deadlines constantly, something is making organization and deadline-meeting difficult. Even if a person is actively choosing to self-sabotage, there’s a reason for it — some fear they’re working through, some need not being met, a lack of self-esteem being expressed. People do not choose to fail or disappoint. No one wants to feel incapable, apathetic, or ineffective. If you look at a person’s action (or inaction) and see only laziness, you are missing key details. There is always an explanation. There are always barriers. Just because you can’t see them, or don’t view them as legitimate, doesn’t mean they’re not there. Look harder. Maybe you weren’t always able to look at human behavior this way. That’s okay. Now you are. Give it a try.”

—

— “Laziness Does Not Exist” by E Price on Medium

(And a footnote I didn’t see explicitly covered in the article: laziness still doesn’t exist when it is you yourself making no progress and not knowing why. You deserve that respect and consideration, too, even from yourself.)

[bardichealing]

Changing expectations

I have good days and bad days.

Saturday was a good day. My mum drove me to my hair appointment (she had one at the same salon a little before me so I didn’t feel like I was taking advantage) and in the evening I had a good D&D session (which bard was the only party member not to take damage in the fight with a hydra? This bard!)

Sunday was bad. Maybe I did too much the day before. But I was up through the night with an upset stomach and nausea. I spend all day feeling sick and forcing myself to eat, since eating now has to be part of my treatment. My mum made it as easy as possible, including veg I need to help with the pernicious anaemia but otherwise keeping it bland.

Yesterday was good. I felt stronger. I had a little bit of an appetite (which unfortunately was quashed by my dad making a dinner my mum and I both dislike and piling my plate high with it). I hoped the new pills would be starting to have a small impact. I hoped that today I could walk one of my dogs to the corner. It’s not far but I miss having time outside and especially walking them.

It hasn’t happened. Today is a bad day. I slept badly and dozed until after 11 (one bonus of having a secondary condition that could be confirmed with a blood test and has a pill to take is that my dad has stopped calling my fatigue “laziness” and lets me sleep or nap uninterrupted). I have a temperature. The muscle weakness is making my hands shake and when I stand my legs feel like matchsticks about to snap under the weight of my body. Walking up the stairs after lunch left me as out of breath as a run used to.

I think I have to stop making plans. I think I have to stop deciding “I wil do x tomorrow”. I have to stop thinking that one good day will follow another. I have to learn to live my life one day at a time. And hope that helps me heal.

[bardichealing]

A little understanding

The most difficult thing about my illness progressing, particularly since this new undiagnosed comorbid thing developed, is seeing how other people deal with it.

I’ve always been close to my dad. My mum haemorrhaged when I was born and he was forgotten in the delivery room literally holding the baby after she was rushed away. I still love him to pieces. But he is not accepting of the fact I’m sick. He repeatedly refers to me, to myself and others, as “being lazy”. It’s damaged my trust in him. Even after a doctor assessed me today and decided I should basically be in bed rest. Even though my mum has repeatedly torn him a new one for referring to me like that. The fact I have no energy is laziness. I don’t think I can ever have the same relationship with him any more.

On the contrary, my sister and I have never been particularly close. We fought constantly until I left for uni and until we both got married it was a tense truce. I already knew we’d got a better relationship when she was supportive during the horrific breakdown of my marriage. But even after a long day, with meetings at my nephew’s school, a sick toddler, a regular eight-hour work day, and a frustrated, bored puppy, all with her husband away for work, she’s still willing to take the time to listen to me cry about dad’s attitude and advocate for me taking care of myself. Literally the only illness she’s ever had was myasthenia gravis when she was pregnant. I don’t think she’s ever even had the flu. But she shows as much kindness and understanding as if she’s had all the same experiences as me.

Of course the same is true of people outside the family. People I only considered acquaintances have been offering sympathy, help, and support. The people I thought would be kind and supportive are the ones who make thoughtless, insensitive comments. Some of it is ignorance, but too many in society are allowed to get away with this lack of knowledge and understanding of invisible illnesses. They’d be the first to show up with tea and sympathy if I was suddenly to show up in a wheelchair or have some other visible disability.

A little kindness goes a long way. I guess I was naive to assume I’d surrounded myself with people who felt the same way.

[bardichealing]

Why can’t people listen when I say “no”?

‪I’m just so tired of people not understanding that I’m tired because I have chronic illness fatigue because my HS is progressing and getting worse. Your “helpful” comments just make me feel like s‬hit.

‪“Just go to bed earlier.” No. I could get a solid 8 hours every night (good luck with that with chronic pain) and still be exhausted. ‬

‪“Keep doing things. You’ll feel better once you’re out.” No. I have a finite amount of energy. Fresh air is nice but doesn’t increase it.

‪“But it’s only [insert amount of time/work here]!” Good for you, healthy person. Maybe that doesn’t feel like much to you but for me that feels like running a marathon. Every day.‬

‪“But you’ve always done...” I also used to be healthy. I don’t need reminded of the fact my body’s failing me.

‪All this frustration & upset is because I am progressing and getting worse. I’m trying to pull back from commitments I made when I was healthier. People just won’t let me because I’ve always been the “reliable one”. They won’t hear me when I say “I can’t anymore.

‪I wish there was a card I could just hand to people to explain chronic fatigue. Having to constantly explain it and argue my case is tiring me even more and leaving me tearful and upset as well as exhausted. Or just someone to back me up when I say “no”.

[bardichealing]

I know a lot of people have this idea that they should be pushing themselves past their limits to achieve something. My illnesses and disability have taught me that pushing myself past my limits can only harm me. Yet, everyone expects me to do so. Here is your reminder that you do not have to push yourself past your limits. Those limits are there for a reason. Just take your time and do things at your own pace.

[bardichealing]

All. The. Time.

Does it ever occur to you out of the blue how bad your condition has gotten? Like you’re just sipping coffee thinking about turtles and then you realize that just a couple years ago you could do so many more things. You realize that you’ve acclimated so well to this life that you can’t even imagine how it was before.