More than a Handful of Close Friends

Have you heard of the saying “In your entire life you can probably count your true friends on one hand.”?

I’ve never given it much thought. During my childhood friendships didn’t last long. My family regularly moved from state to state. I stayed in once place for my entire high school education, and did maintain friendships until I moved states as an adult to seek treatment for an eating disorder.

I’ve now been in Melbourne for nearly nine years. That’s the longest I’ve ever lived in once place. I’ve met new people, made new friends, and maintained some wonderful friendships.

Recently life has become much more stressful. Different mental health issues have flared up, I’m moving house, and I’ll be going into hospital at some point. There is a lot to do. I’m overwhelmed by everything that needs to be organised, done, and ticked off.

There’s packing, and moving. Those are draining even for a healthy person. Add ME/CFS to the mix, and it’s horrible, painful, and exhausting. I have to work out what can be packed now, what I need to leave out for my hospital admission, and what has to be packed by my housemate when I’m gone.

However, I feel lucky. Very lucky. Multiple friends have offered to help move the boxes I’ve already packed. One is going to help move my 150L fish tank. A group of people from an online support group are crocheting fish for me, which I think is meant to be a bit of a surprise. Another friend travelled into the city and met me before my psychiatrist appointment last week. My housemate is going to move any of my things I don’t have time to move, as well as moving all my furniture. Another close friend is only ever an SMS away, and will most likely be able to drive me to the hospital whenever that may be.

My hand is full of close friends. Sometimes I feel lonely, and isolated, but I’m actually surrounded by many wonderful people. Friends that won’t walk away when things get tough. Friends that accept me, us, for who we are. Friends I love dearly.

Things are still hard. Really hard. I’m physically exhausted, in pain, and emotional. There’s a lot that still needs doing, but I don’t need to do it alone.

That’s what I’m trying to remember – I don’t have to live in isolation. I don’t have to be brave, or strong, or do everything on my own. I can ask for help, and there are people who will help without even being asked.

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.

 

Sick.

I feel like I’m continually explaining my lack if updates on this blog. It makes me sad because I love writing but haven’t been able to.

For the last few weeks I’ve been incredibly unwell and the end is not in sight. My GP isn’t sure what’s wrong with me but suspects a virus. I have a never ending sore throat, varying levels of pain and fatigue like you wouldn’t believe. At it’s worst lying in bed reading drains what energy I have. I have to put my book down and sleep because I can’t concentrate.

I’ve cancelled everything I possibly can. I’m eating well, drinking plenty, taking my multivitamin again, taking painkillers as needed but I’m not getting better. I can only hope that time and rest will help my body heal. Until then it’s highly unlikely that I’ll be updating this blog.

Making a Comeback.

It’s been a long time since I’ve written anything decent here, so my apologies for that. Having RSI in my wrist has been incredibly difficult for me, although I’m definitely past the constant pain – I just need to be careful and not overdo it. That means limited typing, writing and being super careful at work (I’m a supermarket cashier).

I recently bought a new Macbook Pro and it came with a dictation program which worked reasonably well. I was quite impressed given that the way I speak tends to send Siri (on my iPhone) into a tailspin! It’s meant I can chat to my friends online and do some journaling without having to type, but typing is still better!

Plenty has been happening in my world, (dot points cos it’s easier!) –

  • I’ve returned to work which is great, but a little tiring and certainly fills in my week.
  • I’ve had to face the loss of my Grandma again, despite her passing away in February. I face it, push it away, then it comes up again and again and again. The grief that follows isn’t getting easier to deal with.
  • My Christmas and New Years plans have been organised (pending time off work) which is a relief.
  • There’s been the usual ups and downs with everyone inside, but generally no on-ongoing chaos – once we can work out what’s wrong and work with whoever’s upset the issue usually settles quickly.

I’m sure there’s plenty more that’s been going on but I’m not going to try to remember it all! Despite over two months off work I have been incredibly busy. I’ve spent much more time with friends which has been lovely. Now there’s less time to spend with friends, but the income is nice – I’d completely run out of sick pay about a month into my time off.

I’m hoping to keep this blog updated more regularly now that I can type a decent amount without significant pain. Keep your eyes open – there will be a new post soon!

Still Out of Action.

Apologies for my absence – the wrist pain persists! It’s been one month now – without work, with very limited writing, typing, sewing, painting etc. It’s frustrating, boring and isolating. I’m getting appropriate treatment but it’s a slow process and I have no idea when my wrist will be back to normal.

Often, when I have time off from work, I’ll start a creative project of some kind. I have so many things half finished at the moment – a wooden jewellery box that I’m painting, building rock caves for my fish tank, sewing fiddle tags onto my weighted blankets… along with the usual drawing, colouring in etc. However, because of my wrist – I can’t do those things, or only in very small amounts.

Work is out of the question and I don’t know for how long. I worked just over weight hours this week. I did about three hours training a new staff member which was simple – didn’t require any use of my wrist aside from ticking items off on my list. But then, the real shift, on register – scanning, handling cash, lifting bags. Not good. The pain flared up slightly whilst working, but the following day (today) – bad pain. I’ve seen a physiotherapist, have stronger anti-inflamatories and will go back next week for a follow up.

am managing to find activities to fill my days and to break the monotony, but… it sucks. I want to work. I want to feel productive and useful and I want to be around people! I also miss the things I can’t do (or only in limited amounts) right now – writing is the big one! I’d normally churn out, at least, six pages of typed or hand written A4 pages per week. Some weeks it’s much, much more. Writing is definitely the most painful activity, along with sewing and scanning groceries at work. I can type with much more ease, but large amounts of typing will cause just as much pain as a small amount of writing.

It leaves me with a bit of a dilemma – write (or type) and process everything that’s happening internally or don’t write and risk chaos building inside and spiralling out of control. It’s hard! I can’t write a minimal amount because it’s not enough to process and manage all that goes on in my head. It’s a bit of an all or nothing situation, although I am trying to find middle ground. I try to have more conversations inside instead of writing it all… which is hard because I tend not to remember internal conversations, written conversations are much better. It means that when I do feel chaos building inside I ignore any pain and start writing. It’s not ideal, but it prevents a full blown mental health crisis. 

There’s also the enjoyable side to writing. It’s definitely a passion and I love that it keeps me thinking whilst I’m not at uni. There are so many things I want to write about – I have a list saved to my desktop that’s already a page long and I’m constantly adding to it! I’d love to hear suggestions on anything you’d like to see me write about or questions you’d like answered. Anything about mental health, DID, trauma, therapy… I don’t know – anything along those lines or anything related to any of my previous posts!