A Consultant Appointment

Today I saw a “new” rheumatologist who I will call Dr P. I put new in quotation marks because it was a new referral but I have actually been under that doctor before 10 years ago.

10 years ago, I had been diagnosed with ME/CFS and nothing else. Then I saw Dr P who diagnosed me with fibromyalgia. He never said that my first diagnosis was wrong and I didn’t have CFS. He wanted to track my sleep with a special wristband (it was like a fitbit but fitbits weren’t really a thing back then). I never got any follow up about the sleep tracker thing.

I stopped seeing him for some reason but 10 years later, I got re-referred to him to investigate possible sjögren’s syndrome. Which is why I had my appointment today.

He read my referral letter and it said about having CFS. So I said I had been diagosed with CFS/ME and fibro and gave him the list of dianoses. His response was that it is impossible to have both fibromyalgia and CFS/ME. Despite all the doctors I’ve seen since including rheumatologists, no doctor has said that to me in the last 10 years. Also, there are loads of people that are diagnosed with both, so either he is wrong or all those people are incorrectly diagnosed.

He asked about my sleep and I explained my sleep pattern. He asked to see my hands and bent a few joints, then to see my back where he poked me a few times and asked if it was tender, and I said yes. He then said he needed to look at my back without my tshirt in the way, and proceeded to lift the back of my tshirt before I had a chance to respond. I would have given permission for him to look but it was weird for him to do that before I could say anything. As a result of this, he said I was hypermobile in some joints but not in my hands.

He said that based on my sleep pattern, I have CFS, not fibromyalgia. Remember that he diagnosed me with fibromyalgia in the first place- but I don’t think he realised he was the one to do that.

Dr P asked if I was on any medicines for my mood. I said no but I had been in the past. I came off the medication because my mood was better and I didn’t need them anymore. He asked about my social life and I said I don’t see my friends much but I get to the park and see people there and I have my dog with me most the time. There was no mention of socialising online. He asked if I work or study- I said no but I have lots of hobbies. He asked who was living with me- I answered and mentioned my stepdad. He asked if I saw my dad and I said I hadn’t had contact for 2 years and I had never had a good relationship with him so I was happier without him in my life.

Dr P said that from what I told him about my life, he thinks it’s impossible for that not to have an effect on my mood. And basically said that I was suppressing my emotions. So apparently you have to be depressed if you are isolated at all. I don’t actually feel lonely at all most of the time.

He went on to say that my CFS will be caused by my bad relationship with my dad and by sleeping too much. I should avoid naps, sleep less, have therapy and increase my physical activity aka exercise more. I can’t avoid naps since I only have naps when I’m unable to stay awake until bedtime- they are usually an accident. Again, I can’t sleep less because they I just fall asleep constantly. I’ve spent years in therapy in the past and I have no idea what I would need to talk to a therapist about since I feel happy. And I exercise as much as I can.

He also said I’m using my walking frame “like a crutch” but then said about it showing myself and others that I’m disabled. So I think he meant an emotional crutch rather than a physical crutch. And that I should try to stop using it.

He didn’t ask for much history. He didn’t ask if I smoke or drink. He suggested I use coffee to stay awake- I didn’t bother to tell him that I feel really ill on any caffeine because by that point I was just waiting for it to be over. He didn’t even ask about psychological history so he knows nothing about the trauma I’ve been through (several years after I first got sick so it couldn’t have triggered it) which you would think he would want to know if he’s going to blame psychological stuff. He also didn’t ask how much exercise I get before telling me increase my exercise.

However, he is sending me for a test for sjögren’s syndrome. So I consider it a successful appointment. Not a good appointment, but successful.

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Guilt over needing care

There’s a lot of emotions that come with chronic illness. Over the last 15 years, I’ve dealt with a lot of those emotions and they aren’t a big problem for me.

But I often still feel guilty for the amount of care I have needed over the years and the things that have been done to accomodate my illness.

If you are training to be a nurse, you learn how to care for someone without hurting yourself. My mum did not have that training, but suddenly I needed care and she was providing it.

She now has more chronic pain than she used to. Maybe that would have happened anyway since she’s 15 years older now, and she already had a back problem from before I was ill. But I can’t help feeling guilty that looking after me may have contributed to the pain she feels now.

I also feel guilt over waking people up. My pain isn’t restricted to the daytime. My colitis isn’t restricted to the daytime. So sometimes, in fact pretty often, I need help during the night. Which means waking someone up to help me. And then I feel guilty. No one likes interrupted sleep.

I know no-one, including my mum, blames me for anything I need because of my chronic health conditions. But that doesn’t mean the guilt goes away.

I’ve dealt with denial. I’ve dealt with anger. I’ve dealt with depression. And I’ve mostly got past those feelings. But I’m still struggling, after 15 years to get past the guilt.

Logically, I know it’s not my fault. My only other option was to go into a care home. Which is just not affordable. But I just can’t let go of the guilt. Hopefully one day.

26 hours in A&E

At the mid to end of July, the pain in my abdomen was getting so bad that, even though I was due to see my gastro doc in just over a week, I went to the accident and emergency department at my local hospital.

It was… an experience.

I arrived at the hospital just after lunch time on the Friday. I explained my history, my symptoms, and that I couldn’t cope for over a week until I saw my doctor.

I was sent for an x-ray and told not to lie down before it. And bloods were taken. It is procedure to put in a canula to take bloods when you go to the hospital, that way it is ready if you need medication. For some reason, a doctor did my bloods rather than a nurse. I told her my veins were awkward. I also directed her to my most friendly vein which is in my wrist. I’m not sure what went wrong but it was super painful, she wiggled the needle around a lot, managed to get a couple of drops of blood, then gave up with the canula. She used a regular needle in my elbow to take some bloods.

So at this point I’ve been stabbed with a needle twice, bloods have been taken but I have no canula.

I get admitted to a ward, but before they take me to the ward, I need a canula. It goes in seemingly fine in my forearm and I’m taken to the ward.

I’m waiting to see the doctor and get given a meal to eat. Which was gross but does anyone actually expect good food at hospital?

The doctor I see says that I’m constipated with diarrhea pushing past the constipation. She thinks I can be sent home with laxatives and have a test for SIBO as an outpatient, since my symptoms seemed similar to when I had SIBO. I tell her that when I’ve been admitted before, it’s much quicker to get a test as an inpatient than an outpatient. I ask her how long the wait would be as an outpatient because I would just be readmitted unable to cope with the pain. She decides to speak to her superior.

She comes back and says her superior thinks they should treat it as a colitis flare up just in case until I see the gastro specialist in the morning as they were general medicine. So I get given IV steroids by the nurse.

It is sooo painful having the steroids, something I don’t usually find painful, that the nurse decides to stop giving the medication and take the canula out of my arm.

At this point, I am so exhausted and in so much pain just from being in hospital that it’s not possible to tell whether it was a problem with the canula or just me being extra sensitive.

They decide to leave the canula out until it is time for my next dose of steroids in the morning. So I get to sleep without a needle in me.

But sleep I did not. Hospitals beds are not the most comfortable and I was in a lot of pain. I rely on a comfy bed to reduce my pain each night. I spent a hell of a lot of money on my mattress so that I can be comfortable enough to sleep. But I just couldn’t sleep. It didn’t help having the light and noise of a hospital ward. I got about 2 hours sleep. Much less than my normal 12-14 hours.

In the morning, I was given a canula. The nurse tried to put it in my elbow. I was in a lot of pain as she did it. She asked ‘does it normally hurt this much?’ I said no and she decided to try my wrist instead.

No medication was given through the canula because at that point the gastro doctor arrived. It was decided by her that I had a colitis flare up, because even though my inflamation markers in my blood were low, my symptoms suggested colitis and blood markers don’t always show it until later. I was told I could go home with steroid tablets and laxatives for the constipation. I was also told it would only be a short course of steroids.

There was some waiting around for my discharge to be organised and to get my medications for me to take home. But 26 hours after arriving, I left the hospital.

I go home and sleep for a few hours and then I look at the medication they’ve given me. 8 tablets a day for 2 weeks then reduce by one tablet a week until finished. It was a 9 week course.

I was not happy about having 9 weeks of steroids. Last time I was on steroids, my mental health got so bad that I attempted suicide and ended up in A&E. I thought about what the doctor had said. Se said my inflamation markers were only slightly raised- they are normally slightly raised because of my other illnesses. She said my symptoms suggested colitis- but I had no blood, the mucus can be caused by constipation, and colitis doesn’t cause the amount of gas I had (or at least it hasn’t caused that in me before). I decided not to take the steroids. If when I saw my own gastro doctor, he told me I needed the steroids, or if my symptoms got worse, I would take them. I didn’t want to put myself through anxiety and depression unless 100% necessary, and the first doctor, who really seemed to listen to what I had said, hadn’t thought it was colitis at all. I took lots of laxative though and some of the pain started to ease.

A week and a bit later, I saw my gastro doctor. I told him what had happened, what my symptoms were, why I decided not to take the steroids, but that I would take them if he told me to. He said he didn’t think I needed steroids. He was happy that the laxatives were working. And he gave me antibiotics to treat SIBO- he didn’t think a test was necessary based on my symptoms and having had SIBO before.

It took over 2 weeks before the bruises from the 5 times I was stabbed with a needle went away. I also had to deal with the rash around where the canulas had been because the sticky stuff always makes me red and itchy.

But things are improving now.

Going to A&E got treatment for only one of my problems- constipation. And not for SIBO. And I was given steroids when I didn’t need them. But if I had waited until I saw the gastro doctor, I would have no doubt needed an x ray and blood tests and everything before he could start treatment. So it definitely speeded things up and the laxatives reduced my pain to manageable levels.

One of the needle marks (the first one that the doctor completely failed at) is still visible on my wrist. I just hope it won’t become a permanant scar. I have a needle mark from 2 years ago so it wouldn’t be out of the question to scar.

Besides the failed canulas, the uncomfortable bed, and the not-so-great food, it wasn’t that bad. The doctors nurses and healthcare assistants were all very nice. Apart from the gastro specialist who didn’t seem to listen to what I was saying.

When disability benefits go right?

My disability benefits were due to be reassessed next year. I had already started worrying about it. Worrying about sending the form in, whether I would be well enough to deal with the form when it came, how the assessment would go, whether they would give me a home visit or not, whether I would have to go through appeals, whether I could afford to live while it went through appeals, etc, etc. I was worrying despite it still being a year away.

A few days ago, I woke up to my mum waking me for lunch (as is my usual routine). While I was still lying in bed, she said, “You’ve got a letter from the benefits people”. My heart sunk immediately. I knew it couldn’t be a cold weather payment (to cover extra heating costs)- not in July. Every other letter from them was never good news. I was filled with dread and wanted to go back to sleep- ignore whatever I would have to face until later.

“You’ve been given an ongoing award,” she continued.

WAIT WHAT?! I was confused.

“You won’t be assessed again for 10 years.”

The confusion quickly disappeared, replaced by certainty that my mum had misunderstood the letter. I got up, went downstairs and read the letter. It seemed my mum was right. Maybe they had sent the letter to the wrong person? I read the letter again and again, compared it to a previous letter from them showing my points on different sections of the assessment. It definitely appeared to be for me.

It took a few hours but eventually, it started to sink in that the letter was for me and I had in fact got an ongoing award. Only after I did some googling and found that the UK government has started to do ongoing awards for disability benefits, with a ‘light touch’ review (no major reassessment) every 10 years.

I felt discombobulated for the rest of the day after getting the letter.

It makes sense for me to have an ongoing award. I’ve been disabled for 15 years now, so I’m not going to miraculously be cured unless there is some major development in medicine. But I never expected to get anything like that without having to fight for it. I’m so used to having to fight for my benefits that it took me entirely by surprise. I hoped writing this post would make it sink in, but I’m still waiting for a letter to come saying ‘oops we made a mistake’.

 

NOTE: my mum opens all my letters about benefits because it stresses me out so much and I can’t deal with it. She wasn’t opening my post without my permission or anything.

Periods and my chronic illness

On top of my chronic illnesses, I have to deal with periods. When I get a period, it causes a crash. I will be barely able to get off the couch to the toilet during my period. And it will take me a week to recover afterwards, and a week or two more to get things back on track.

I live in dread of my periods.

I have tried different types of contraception in the hopes to stop my periods completely. None have been successful.

I now take the combined pill, which means I can skip periods instead of having a break from the pill each month. This means I can ensure I don’t have a period when I already have a cold or when I have an important appointment that I can’t miss, or so that I can actually enjoy holidays. But I can’t skip them indefinitely and every few months I have to have a period or I start spotting a lot.

If you have migraines with aura, you shouldn’t take the combined pill because of an increased risk of stroke. I have chronic migraines, but I don’t get auras with my migraines. It would be preferable for me to not be on the combined pill, but it’s not a complete no-go. But me and my doctor decided that the increased quality of life I get by skipping a lot of my periods was worth any increased stroke risk.

Every time I get a period, I end up researching hysterectomies. I really want to be able to live without periods. My physiotherapy is most effective if I can be consistent, but every few months, when I have a period, my physiotherapy gets a set back. Every time I have a period, my sleeping pattern gets screwed up again and I have to try all over again to fix it. My diet ends up screwed up because I feel too sick to eat and so my digestion gets screwed up. Everything gets messed up for a few days and then once I’ve gotten back on track, the next period is never too far away.

With all the brilliant things modern medicine can do, if the doctors could come up with a completely safe way for me to completely stop my periods, I would really appreciate it. For now, I will continue lying in bed burning my abdomen with hot water bottles.

Am I smarter than my doctor?

Last night I had a problem with my eyes. I spoke to the NHS helpline. My eyes were painful and it seemed like an allergy to the eye drops I was using. But having anxiety, I naturally freaked out that I would go to bed and wake up blind.

The nurse on the helpline was great. She said it was fine to wait until today for a GP appointment. So I saw a GP. It ended up being a locum GP rather than my usual doctor. And he didn’t seem to understand the problem at all. He tried to give me stronger eye drops of the same thing. It was only when I said, won’t I react to those as well? And then repeated my symptoms saying it seemed like a bad reaction to the current drops, that he then agreed it was probably the eye drops.

But this is not the first time I’ve had to point out things to my doctor.

A few years ago, I had small intestinal bacterial overgrowth. My GP referred me to a gastroenterologist to get it checked out. He ran a bunch of tests, put cameras inside me. And came up with not a lot. After several months of symptoms taking over my life, I took it upon myself to research all my symptoms. It didn’t take long to come across SIBO. My symptoms matched perfectly. I asked for the test. I got the test. It came back positive for SIBO. I took some antibiotics and I was suddenly a lot better.

A couple of years after that, I got what turned out to be colitis. Was referred again to a gastroenterologist but a different one this time. I was told I had IBS. I went back to my GP. My GP agreed with me that blood in my poo didn’t seem like typical IBS and agreed to send me to a different gastro doc. Before I saw the second doc, I ended up admitted to hospital.

I’ve had chronic fatigue syndrome and fibromyalgia for years. I am well aware of the NICE guidelines for my illnesses. But a few years ago (possibly when I moved from children’s to adult’s services but I can’t remember exactly) I saw a rheumatologist whose advice was pretty much the exact opposite of the NICE guidelines. The guidelines say I should be pacing. His advice was mostly ‘get on with it’. I made a formal complaint and didn’t see him again.

I have seen a tonne of doctors in my 26 years on this planet. And a whole lot of them have been excellent. But every so often I get a not so good doctor and I wonder how they got through medical school if I, a person who gave up biology classes at 16, could tell they were being idiots.

Noise and exhaustion

I’ve had a pretty normal day today. I’ve not done anything tiring or that I wouldn’t normally do.

However, I am exhausted and it’s not even dinner time yet. I have the whole evening ahead of me.

The reason? Noise. The windows have been replaced in the front room today. There was a lot of noise all day. It’s like having constant mental stimulation and it’s exhausting.

I’ve known for ages that mental stimulation is tiring. But usually that involves beig outside the house with other things going on- not staying in and having a ‘restful’ day surrounded by noise.

It’s made me worried about the new neighbours. My neighbour died last year and the house is being sold. He was very quiet and noise from him never bothered me but the walls are quite thin. My bedroom and lounge both share one wall with the neighbour’s house. If there are kids that scream a lot, or people that listen to music loud, that might be difficult for me to deal with. They will probably do work to the house at some point as well. It’s one of the few houses round here that don’t have an extension.

I’m wondering how much it would cost to have the joining wall soundproofed. Probably more than I can afford. But it might be something I will have to look into.

The window fitters are back here tomorrow, replacing the upstairs front room window. I will be out part of the day at a hospital appointment, but being out isn’t exactly a restful break from the noise. I feel like I need to sleep for a week just from today. I don’t want to think about what I will be like after tomorrow.