Sick and Tired

I needed a break from healthcare appointments. I cancelled all of my appointments. I was just so tired of talking about my health, my feelings, my thoughts.

The break lasted about one and half weeks. I got a letter in the mail form my optometrist. A reminder for my annual check up. No biggie. I made the appointment for the following day just to get it over with.

Then it turned to shit. The appointment wasn’t actually for a regular eye test. It was for new photos of my badly bulging optic nerves, and a peripheral vision test to check for vision loss.

This isn’t new to me. A couple of years ago they discovered the problem with my optic nerves. It was thoroughly investigated, and specialists eventually concluded that I had pseudopapilledema (sue-doe-pap-ill-ed-eema). They said, due to lack of symptoms, that it was nothing to be concerned about, but to get my eyes tested annually.

Jump forward to now. Two years after that diagnosis. My optic nerves are bulging more than they ever have. I’m to follow up with my GP who can do referrals for relevant tests, scans, and outpatient referrals.

I dread this. I suspect I know how this goes.

I see my lovely GP who has a little panic. Then it goes one of two ways. The first way she keeps her cool, and sends me off for any relevant blood tests or scans, and an outpatient referral to a specialist. The second way she completely panics, and sends me straight to the Eye & Ear hospital where I spend the rest of the day in their emergency department.

When I eventually see a specialist (whether inpatient or outpatient) they’re likely to explore the possibility of Idiopathic Intracranial Hypertension. Basically, increased pressure in my brain that pushes the optic nerve forward into my eye. That was the potential a couple of years ago, but they ruled it out due to lack of symptoms.

If I see a specialist about the pseudopapilledema they’re likely to tell me that I need to lose weight. I know I do. I’m 40kg above my healthy BMI. Yes, I know BMI isn’t a particularly accurate way to judge health, but it’s what the majority of doctors rely on. If it’s IIH, even if it’s not, they’re likely to recommend weight loss.

That’s fine. I understand how weight loss would help this, as well as all my other chronic conditions. It’s just that I also have an eating disorder, and every single weight loss attempt has ended in a severe relapse.

I’ve only just gotten back to eating a bit more, and a bit more regularly. Now though? Gone. Obliterated. No food for me because I’m causing, or worsening, my health issues, and it’s all my fault. That’s where my head has gone.

So weight loss to improve my health? Necessary, yes. Possible? I don’t now how. Physical health issues mean I can’t do anything even resembling exercise. Throw in all the mental health issues, especially the eating disorder, and I don’t know how I can lose weight, remain sane, and maintain the health I do have at the moment.

I’m sick and tired of being so sick and tired.

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Cancelled

I’m free. No healthcare appointment for three weeks. By chance my next appointment with my psychiatrist is in three weeks, not the usual two. I cancelled the appointment I had with my GP today, and I’ve seen all my other specialists recently.

I’m just done. I’m so emotionally exhausted from talking about symptoms, treatments, response to treatments, managing medication side effects and withdrawals. Mostly the talking though.

I’m mostly housebound. I manage to leave the house for appointments, and that’s about it. I see family when there’s time for me to spend the night there and properly rest. I see friends most when they can visit me. Just getting to and from medical appointments all over Melbourne exhausts me.

I don’t drive because a) I don’t have a license b) I can’t afford to buy, or run a car and c) I wouldn’t be safe to drive a  car the majority of the time. That means relying on public transport. It’s pretty good in Melbourne. I can get to most places without too much trouble, but it does take a lot of energy. I’ve applied for funding for either a mobility scooter or power chair, but whether or not that happens is another matter.

I just need a break. Physically I need to rest and regain some energy. Emotionally I need a break from the near constant health talk. All of the healthcare appointments have meant talking to, and seeing friends even less. So the majority of the interactions I’ve had with people have been with healthcare providers about different aspects of my health.

I’m done. Just done. 100% done.

ME/CFS: It’s Not Fair

It’s one of those days. You know, one of those days where everything hurts, everything makes you cry, you feel so alone and isolated, life feels empty and meaningless. One of those days.

I have ME/CFS which comes with chronic and severe fatigue and pain. I’m exhausted and in pain. I’m stuck in bed watching TV because I’m not well enough to do much else. RSI in my wrist has flared up which makes typing difficult, and any creative projects I could work on impossible and unwise.

I feel left behind and left out, like the world is rushing by whilst I sit and watch from the sidelines. I know this isn’t an entirely accurate perspective, and I know I don’t always feel this way. It’s just today I’m at home, in bed, watching TV because I’m not physically well enough to do much else. I could push myself, but that will only increase symptoms and make tomorrow worse.

I’m well enough to be very bored needing to rest.

Other people, ‘normal’ people can feel bored, and get up and leave the house. If I chose to leave the house today then I’d be unable to leave the house tomorrow to see a friend as planned. I can’t choose to go outside and do some gardening because it takes too much energy, and I can’t use my wrist. The little crochet dinosaur I’m working on for a new nephew also has to wait because of my wrist. I have to save all my energy today so I can use it all tomorrow, and spend the weekend in bed recovering.

This is where the tears come in.

I’m crying because I don’t know if I’ll ever be physically better.
I’m crying because I feel so alone and left out.
I’m crying because I don’t feel in control of my life.
I’m crying because I don’t want this to be my life.
I’m crying because I don’t know how, or if, I can change this.

‘Where have you been?’

‘I haven’t seen you for so long! Where have you been?’

I lost count of the number of times my colleagues asked me this yesterday. It was my second shift back at work in as many weeks. My colleagues can be forgiven for not having seen me. I’m able to work only a small number of hours each week, and my roster changes each week. Often we miss each other because of different shifts.

Where have I been?

Back and forth between healthcare appointments, with the remainder of my time generally spent at home resting. During the peak of the health chaos I’d been to four different hospitals in seven days. Then there were the follow up appointments with my regular healthcare team, as well as specialists. I’m still waiting on two more outpatient specialist appointments, but things have quietened down.

It was very scary and stressful having a potential new health issue come out of nowhere. I’d been feeling my usual ME/CFS symptoms – worn out and sore. I was told the condition I may have could cause serious complications if left untreated, and researching the prognosis online did not help. Thankfully further tests have revealed that it’s unlikely I have the condition. I have further tests and follow up later in the year.

Then (because there’s always more!) my mood spiraled upwards into hypomania. Whilst that’s been fun, entertaining, and refreshing, it’s also destroyed my budget, strained some friendships, and physically worn me out. ME/CFS and Bipolar II are an utterly ridiculous combination, and the hypomania has been more difficult to manage this time.

As for The Committee there have been quite a few changes since our hospital admission over Christmas. Nothing hugely noticeable to anyone on the outside, but some significant shifts inside. Attitudes have changes, and we’re more focussed on working as a team than ever before.

I’m hoping (and crossing my fingers and toes) that I’ll be able to get back to writing more regularly now, but please be patient with us.

More than “tired”.

Ahhh, the long awaited update! Well, I’ve been waiting ages to be able to write a post, even if no one else has been waiting to read it!

My excuse, this time, is serious illness. I posted quite a while ago about being unwell with an unknown plague. It took a few more months of symptoms and tests before my GP referred me to a consultant physician. Within about five minutes this doctor diagnosed what I was hoping I didn’t have. Myalgic Encephalomyelitis  or Chronic Fatigue Syndrome.

Now, stop right there! I don’t want you, my dear reader, to automatically conclude that I was very tired and little else wrong, as so many people tend to do. The CFS label is very misleading and  doesn’t come close to describing the severity of symptoms people experience.

Each day was torturous. I couldn’t do even half of what I wanted to do, let alone the things I needed to do. Standing up and walking around zapped my energy quickly. I couldn’t go shopping with friends. Just walking slowly around a store for fifteen minutes would exhaust me. I’d have to sit down and rest, and even then I’d spend the following days in bed recovering.

A lot of the time I couldn’t even watch movies in bed. I couldn’t comprehend what was happening the movie and my eyes wouldn’t stay open. The only uni study I did was under the influence of large amounts of caffeine. Even then, I’d fall asleep half way through the fifty minute lecture I was watching whilst lying down in bed.

Nothing I write here will convey the extreme fatigue. Nothing. Until you’ve been there, you can not and will not understand. You might relate to being exhausted after a long, busy day or a sleepless night, but that’s very different to the never ending, day-after-day, soul zapping fatigue that comes with ME/CFS.

Don’t argue with me now. I know people try to understand, want to understand, and do have compassion, but, honestly, this is an alien world. In the last six months I’ve experienced the worst health I’ve ever had in my life. I’ve also been told everything from “I’m so sorry, that must be really hard” to “You should try exercising more, that will give you more energy”. I’ve also heard, countless times “I’m tired too, I must have that [ME/CFS] too!).

No. No you don’t. Well people, normal, healthy people can recover from fatigue with some rest. A few quiet days, some decent sleep – cured. For me, that doesn’t happen. If I continually push through the fatigue, my symptoms get worse and worse until I’m actually unable to do anything but rest in bed.

Let me explain what a single day was like. I’d wake up at a reasonable time, maybe 8am after eight to ten hours of sleep. I’d be exhausted. My body would feel heavy and weighed down, like I’d been up all night. I’d drag myself from my bed for some breakfast, then eat in bed and remain lying down for the rest of the day.

My body ached in so many different places. Every day meant multiple doses of the strongest pain killers I could get without a prescription. They’d ease the pain and make moving from my bed more bearable. The pain killers didn’t ease the headaches though. I’d have to turn everything off – no lights, no laptop, no phone. A dark room with an ice pack on my forehead and double doses of pain killers to ease the pain.

I had to take time off work. Even with two energy drinks and multiple cups of coffee, I’d struggle through my five hour shift, then come home and be asleep within a couple of hours. My social life disappeared. I didn’t have energy to leave the house for something as unnecessary as socialising. Thankfully some friends did visit, and some would take me places which helped a lot. A lot of the time though, I didn’t have the energy for socialising.

So, I’ve had six weeks off work, I’ve started a tricyclic antidepressant called Nortriptyline, and I’ve been resting a lot. Medication and rest have made a big difference! I can concentrate (without caffeine) for much longer – I don’t fall asleep watching uni lectures online, although I am tired afterwards. I can walk for much, much longer without becoming exhausted, as long as I walk slowly. Plus I can stand and chat to people, even my housemates, without needing to sink to the floor in exhaustion after a few minutes.

Things are definitely looking up. I’m returning to work tomorrow. The plan is to do the same number of hours, but in shorter shifts. The Nortriptyline has been increased slightly and, fingers crossed, my symptoms should continue to improve.

So whilst my physical health has been terrible, but is improving, my mental health has been rather average. Up and down, slightly all over the place. That, however, is for another post.