It’s been months since my last blog post, and it’s taken me until now to find the strength and energy to actually say ‘hey, I’m on hiatus!’ officially. I’m doing ok, the blog is here to stay, but the more I learn about my life now with Chronic Fatigue Syndrome (CFS/ME), I am realising that everything is different. Everything has to be done differently. That means I need to take some time to get back on my feet, and what was supposed to be a month’s break has now become three months thanks to an ongoing viral infection that seems to love me just a bit too much. I could hang back and wait for the new year, but there’s a Christmas project that has me really excited and I’m determined to put it into action this year. So I’m taking November to recharge, change some things up and get posts ready to go for December.
I don’t think any of my other health conditions has had such a massive effect on my life, at least not in a way that has upset my daily routine and hobbies, as much as CFS. I am now officially diagnosed after two or so years (it’s been that long that I don’t even remember exactly) of tests and stress. Having the diagnosis is both a positive thing and a negative thing. It’s here to stay, my life is irreversibly changed and I can’t help but wonder sometimes ‘what if I’d done things differently’. The sad thing is though that I didn’t cause this. It was an unfortunate series of events that eventually took a long term toll on my body. And as a result my life has to change.
The biggest changes are to my other websites. Sites I used to be proud of, that I wanted to work on and new projects that I had planned. None of them seem to matter any more simply because I don’t have the energy to care. I’ve had to face the fact that I can’t give them the attention they need, and that trying to put energy into them is just more of a strain on me. Then I worry about them, worry about myself and what it means. Then one day it hit me; it doesn’t matter. That part of my life has ended, that door has closed. I could take the time to find someone to adopt them, to keep them going but that is just more work, another set of tasks that I have to complete. So instead I’m just saying goodbye, removing the issue and moving on.
In regards to this blog the biggest change is that I’m cutting down on deadlines and weekly/monthly topics. I’ll be keeping the ideas, such as the Birthstone series, but I won’t be putting unnecessary time limits on them. There’s really no reason why it has to be that day of the week, or that particular time of the month. Obviously, there will be some events that will end up calendar based – Christmas topics, for example – but currently the only posts that will have any timing whatsoever will be Transmog Tuesday and the Birthstone series. Sharing Saturday is being retired, and while I will be continuing to do interviews I’m not going to worry about them being monthly.
So I will see you all again in December! ((Photo courtesy of Public Domain Pictures.))
I hate going on hiatus so soon after coming back from the last one, however, this one is for an important reason – my dissertation/thesis. This should have been done and dusted a year ago, but my ongoing health issues and eventual (still pending /sigh) diagnosis of ME/CFS meant that I had to continue to struggle along with it at snail’s pace. I’ve now come to the end of the line, time has run out and I need to get this done for my Masters and for my own sanity. The worst part is that I LOVED my Masters, I LOVE my dissertation topic and I am just so beyond frustrated with how slow my progress has been. As a student with two degrees and most of a Masters behind me, I’m no stranger to having written some assignments in the last few days and I know I can belt out 1-2k words in a day without any problems. Thanks to the flu, the following post-viral fatigue and CFS I feel like I am slogging through quicksand even writing this blog post. If you’ve never written a dissertation/thesis, let me tell you, it is NOT easy. It is not just a bigger/longer essay with more words. And I am doing it with such a massive handicap that it feels near impossible.
I refuse to give in though. I have come this far, and while I have to now live my life differently, I am not going to let my health conditions rule my life. I’ve spoken about mindfulness a few times now, and part of it is the idea of living with our bodies, with our pain. I keep seeing things online about people with chronic pain and CFS, and how much control over their lives they have had to surrender. While I love blogging, and want to develop this blog more, I want a career. I want to be a librarian. I don’t want to have to carry around anti-bacterial gel and use it every time I touch anything, worried about every single germ I could catch. I want to be able to go out, visit places, stop for coffee with a friend. And one step in that road is proving to myself that I can do this, that I don’t need further extensions (if I can even get one) on my dissertation. I also need this chapter of my life done, put away and not hanging over me while I continue to recover and adjust to this new life of mine.
It’s taken me several days to even complete this post, and honestly, things aren’t looking bright. I am gradually doubling the amount of work I get done each day and it’s just not fast enough. Hopefully I can still make the final deadline, however, I know this first draft is going to take me a few extra days. So please cross your fingers for me, send energy my way (if you have any to spare!) and hope that I can push through this fatigue to get this done! ((Banner image from Public Domain Pictures.))
Well, technically it’s Flu 3. That’s the amount of times I’ve had flu in my life and each time it’s left a lasting memory of the god awful feeling of death. I don’t know why flu always hits me so hard. The first time was when I was a teenager and I ended up missing the last few weeks of school right before summer, the second time was 2 years ago and was the trigger for chronic fatigue syndrome. Every time it takes 2 weeks minimum for me to get back to normal, and every time I curse the idiot that went out in public while contagious, thank the flu vaccine for covering me most of the time and listen to my fiancé cursing me when he contracts it from me. We’re both in terrible rough shape with it this time around; me with my 6 diagnosed health conditions and pending diagnosis (yes, still pending, don’t ask) of chronic fatigue syndrome and him with a litany of health problems that include gall stones, chronic pain and a newly discovered rare and super serious (as in the deadly kind) heart condition.
I’ve pretty much been his carer 24/7 since December, and now with us both down with flu it’s becoming even more difficult to keep up with everything. So I’m grudgingly suspending blogging for at least a week. In light of everything, blogging isn’t really important, however, it’s been a life line to my sanity. Therefore, I don’t want to stop it or put it on hold indefinitely. Since my CFS started a year and a half ago I’ve been gradually fighting to keep going, and a lot of stuff has been put on hold. I’m now officially nearing my final deadline for my dissertation, and to be honest, I want it done. I want it off my conscience, off my plate and I want to say ‘hey I can still do this!’. I’ll be back, and in the mean time, you can hear my flu-like woes and rants on twitter @Justgeekingby 🙂 Healing thoughts and energy are readily accepted, as is chocolate and ice cream (sore throat and fever, it’s allowed :P). ((Banner image from Public Domain Images.))
Tomorrow is my first physio session with the Centre for Integrative Care, which is a homoeopathic hospital designed for people like me who have multiple health conditions; “Most patients referred to the Centre are experiencing chronic pain, chronic low energy, and/or chronic low mood or anxiety”.
I’ve had plenty of physio before, I know what to expect, and I know what goes on. The thing that is making me really nervous is that this is an NHS physio. Last time I went to see an NHS physio I ended up walking out of the appointment because the woman was extremely unprofessional. Instead of concentrating on what I needed, I got a speech about how she has hypermobility and is s perfect (stick thin) example of how you can be active and healthy with that condition. Yeah. My doctor was not impressed either. I ended up going private (shout out to Glasgow Physio centre who have an amazing, supporting and friendly team, highly recommend them!) and made more progress in one session than I did in 8 years of on-off again NHS physio.
The problem is that a normal NHS physio is there to get you back on your feet and out the door asap so they can move onto the next person. They are only able to concentrate on one part of your body at a time, not which part is hurting that week. Do you have any idea how amazing it is to go to your physio and say ‘my neck’s been bad this week, can we take a look at it?’ and actually get help there and then? I will hopefully go back to Glasgow physio centres, but right now I need to find out what is happening with my body which means being with the Centre for Integrative Care and being referred for their different services.
The biggest worry is walking in and being told it’s my weight, again. I already have had the ‘you need to be active’ spiel from the consultant – although he was very nice and understanding about it – and the fact that I’ve lost over 2 and 1/2 stone since November is in my favour. I’m working on it, just not actively. It’s like my dissertation work; I’ve been so ill and then I get something worse. Here’s just the last few months; ill in January with glands, February chest infection, March still the chest infection (I think, I can’t seem to shift it) and a stomach bug for 7 days. That’s just the last few months. The last few years have been as bad. I’ve gradually been going down hill until the last year and 1/2 my body has finally had enough. They believe I have Chronic Fatigue Syndrome, which fits all the symptoms and is another chronic long term health condition I’ll have for the rest of my life. It’s depressing thinking of it like that, and I need my new physio to be able to work with me and how that makes me feel. I don’t expect them to be a therapist, just understanding and supportive while also pushing me.
So fingers crossed!