ramblingsofthechronicallyill

[ramblingsofthechronicallyill]

everything, everything, everything has to be taken into consideration

It annoys me when people tell me that driving, travelling of any time, certain actions, moving, walking, talking, sitting, standing, weather, certain jobs, certain people, being....shouldn’t make me tired...

or shouldn’t need to be taken into consideration.

Life with a chronic illness, even when it is improved, still means everything, everything, everything, has to be taken into consideration....

[ramblingsofthechronicallyill]

Low level laser therapy - the help I’ve been waiting for

Low level or cold laser therapy

I’ve taken my time to write this post because, as you might say, I’ve been waiting for the other shoe to drop. But it’s been a couple of months now and my improved health has been maintained so here goes: I’ve had fibro since at least 2005 and I’ve never experience such remarkable improvement (improvement, not cure) as I have had since using low level laser therapy.

I don’t write this lightly or without concern that it will promise false hope - but also, it has been so helpful that I really want to share it in case it does help someone else.

I first read about it in The Brain’s Way of Healing by Norman Doidge in chapter 4 titled ‘Rewiring the Brain with Light’. As I was reading it I was began wondering if it would be helpful for fibro - and then he specifically mentions that it can be helpful for fibro and so I almost immediately looked up low level laser therapy in my area and found an acupuncturist who did it and booked it.

After 2 sessions I could feel the difference. The brain fog was lifting, the pain was receding, I began sleeping better. The change was quick - much quicker than I am comfortable with admitting and the changes were noticeable by those around me. But let me be clear - it’s not a cure and it’s not a once and done situation. I have ongoing treatments, I still get tired, I still get some pain and I still get small amounts of brain fog. However, it is NOTHING like it used to be. I’m quite prepared to live a life that’s a bit tired with occasional paint compared to one where I was in constant pain and always exhausted.

I’m not a medical person so I’m not offering medical advice - what I am saying is, if you have fibro and you’ve never heard of this treatment then it might be worth looking into it. Because I’ve had fibro for 12 years and I’d never heard of it. And I’ve tried, heard of, researched, looked into everything I possibly could have regarding fibro treatments. 

It’s an accumulative process, so everyone does recommend doing a number of sessions close together at the beginning and you will probably be advised that it can take up to 8 sessions before any change is noticeable. After talking to the acupuncturist I decided to commit to 8 sessions to see if that was enough to notice any changes but, like I said, I noticed changes after only 2. It also doesn’t seem to work the same on everyone so it is a bit of a gamble. However, and this is a big however, the side effects are TINY compared to any other type of treatment. Like, I think that medical professionals (doctors, acupuncturists, myo’s, physics, chiro’s....) should just have a low level laser machine lying around and say, ‘look we don’t know if this will help but it won’t hurt so lets just give it ago and see.’ Just in case. And because it does tend to work well alongside other therapies as well - like it can assist in the improvement that a myo or physio treatment can offer. 

Anyway, it was so remarkably effective that Dad wondered if I could buy my own low level laser. I had no idea but we began to research it. And it turns out it is so safe that there are companies selling direct to the public specifically for things like fibro and arthritis (by the way - I have no connection with this company other than having purchased my own machine). The acupuncturist I was seeing wasn’t super keen on ‘non-medical’ people having their own machine (probably because it would take income away from him - which I understand, but as someone who has been suffering from this for so many year that’s not a great concern of mine. Also, I’d never recommend someone just buy a machine to begin with- you always need to go see someone first, hear their advice, and have the therapy to see if it will actually help. However, if I can avoid going back every month, I will. ) So I asked him some questions, he wasn’t super helpful, so Dad and I did our own research and found a company who sold them for what would be the equivalent of a couple of months of treatment and I invested in my own. Yes, it’s a decent outlay, however if you can work it so you can buy it yourself, in the long run it is financially so much better. I now use it every couple of days (something I could never afford to do if I had to keep going back to the acupuncturist) and the benefits have maintained. It is truly amazing and absolutely nothing like I expected - I would NEVER have anticipated such rapid results.

I’ve started studying again, which includes placement. Yes, I get tired and live life at a ‘slower pace’ than most, but I manage. I have started to exercise again (proper exercise where I actually sweat! something I haven’t done since 2004), I’ve reduced how often I need to see the myotherapist (I had it down to every 4 weeks which is the longest it’s been in 10 years but now it’s about every 2 months!) I have started to read books again (books that aren’t novels but that provide information!), I have started to be able to think again. When the weather improves I plan to start swimming again (slowly). I can now actually imagine getting a proper part time job and believe I could actually manage to maintain it (I’ve been terrified of having to find work again because I knew that I wouldn’t be able to manage it and I would just get even sicker). I’ve reduced my medication down so much that I’m on the lowest dose I’ve ever been on. I’m only still on this small amount just to make sure that I keep sleeping well.

Like I said, I do still have to manage life and manage the fibro - it’s not gone. But compared to what it was, the contrast is amazing, it is the biggest miracle - I have effectively gotten my life back compared to what it was.

My advice is, if you have fibro and haven’t looked into low level laser therapy - look into it. No promises but it’s worth looking at!!!

and here because like I said, it’s not a cure, and other things still help.

That’s all I have to say about laser here but if you want some context about the extent of my experience of fibro here’s a bit more (or go here):

I’ve had fibromyalgia for at least 12 years now and it’s varied in depth over that time, but is has completely taken over my life and taken pretty much everything - career potential (at least twice), the ability to make and maintain friendships, my main significant relationship, the ability to provide for myself, potential family, general health and interest in life, the ability to travel, the opportunity to do normal things..… At the beginning I was super sick - showering was a difficult chore, I could do one activity a day (sometimes that was simply showering), I didn’t go anywhere further than 20 minutes away, my outings consisted of medical appointments, I hardly saw anyone, I could do nothing, I lived from day to day because planning was difficult, I never committed to anything, I gave up anything I had committed to.… Over time, I’ve experienced various types of temporary improvement. I’ve done some part time work, some part time study but haven’t ever been able to return to a ‘normal’ life. This isn’t for sympathy but to explain that it’s been difficult and chronic. I’ve tried everything I possibly can to help improve this - I’ve spent way too much time and money. I’ve become cynical about what can help which is why I was reluctant to write this post without seeing what happened. Anyway, my main point is, it’s been years, I’ve tried lots of different treatments and I’ve spent lots of money in the search for improved health. Although I’ve tried lots of things, I’ve tried to be discerning about it, but I’ve also been quite desperate at times for improvement and so I do now think I have spent far too much money on alternative practices. However at the same time, I guess somethings need to be tried to sort out what is going to work for you.

[ramblingsofthechronicallyill]

I want to learn from the person who has been waiting for years....

Occasionally I read something about someone trying to, supposedly develop patience and then I come the dreaded words ‘and in the few months till I got that job / made that decision  / etc...’ and I want to quietly yell at the writer. Especially if they are a writer who is Christian. 

I don’t want to hear about the development of patience from someone who has only waited months, or even a few years. I want to hear about patience from the woman who has had a chronic illness for 25 years. I want to learn about how someone has learnt to be satisfied with life when nothing they thought would happen has, I want to learn from the person who is now 60 and was never able to quite get the life they thought they were being led to by God through no fault of their own. I want to learn about relying on God from the person who has been so unwell that they have never been able to get above minimum wage and are looking towards a retirement with much, much less than is needed. 

[ramblingsofthechronicallyill]

So this is not quite related to the fibro but isn’t everything related to it? 

Anyway, I have a new exhibition coming up that looks at what life is like when you run out of words to deal with life (so therefore is strongly related to the fibro)

I’m pleased to invite you all to my new exhibition - coming soon! ⠀ ⠀ Exhibition Dates 16 June - 2 July⠀ ⠀ Lamppost Gallery⠀ St James the Less Church⠀ Crn Nepean Hwy & Koetong Pde, Mt Eliza⠀ ⠀ Gallery Hours⠀ Wed - Fri 11am-3pm⠀ Sat - Sun 1-4pm⠀ ⠀ In conversation with the artist⠀ Sun 2 July, 3-4pm⠀ ⠀ #exhibition #gallery #comingsoon #art #artandspirituality #spirituality #pray #prayer

[ramblingsofthechronicallyill]

the little thoughts I have after a myo sessions....

So my new thought is that I should start a business where I’m like a ‘mystery’ shopper but for myotherapy practices. A mystery client. I’ve had fibro now for 12 years and I’ve been seeing myotherapists for about 10 years. Seriously, I’ve kept the myo community in business and handed over way more money than I care to think about. (seriously, if I ever make it rich I’ll be hiring a myo on call! My dream is to be able to afford a 2 hour session) 

So given that I’m so experienced in this area I thought I should offer my services as a mystery client and help out practices with their professional side of things!!! I’ve formed some pretty firm opinions about this as I’ve seen at least 11 or 12 different practitioners (the ones I can think of off the top of my head) and this doesn’t include chiropractors / physio’s or any of the other type of practitioners I’ve seen over the years. Myo is just what seems to work best for me.

I’ve developed pretty specific ideas about how practitioners make you feel comfortable in their setting, how they invite you into the vulnerable position of having to take off parts of your clothing, how they interact with you, how much they talk, how much they expect you to talk, how inviting the actual space is right down to the warmth and music being played, and how they move around the room. And none of that includes how they actually do the myotherapy part of their job - how they talk and ask questions about what you’ve come in for etc...

I don’t know how much of the training includes this sort of stuff, but in my experience, it’s not enough. That said - I’ve not come across anything super bad but seriously, it wouldn’t be that difficult for most of them to improve - a lot of it comes down to imagining what it’s like to be a new customer. And also remembering that you are inflicting a great deal of pain on your client (helpful pain but pain nonetheless)

So - any myo practices out there who might want to improve how they interact with customers give me a call - maybe I’ll get some free sessions!!!!! :)

[ramblingsofthechronicallyill]

I’m sick of waking up after a rare reasonable nights sleep (not too late to fall asleep, not too early to wake up, didn’t wake up too often in the middle), and still feeling like I’ve been hit by a freight train, and like my body is covered by a wet blanket. It is such a waste of what could be good energy.

[ramblingsofthechronicallyill]

I relate to this so hard.

[ramblingsofthechronicallyill]

[ramblingsofthechronicallyill]

Yes, feels that way

[ramblingsofthechronicallyill]

I don't like not being in control of the process. I just want my self back.

Sully from Sully movie

Different situations, but this kind of stayed with me.

I just want my self back.

[ramblingsofthechronicallyill]

I feel like I should make an edit - pushing through is generally what I do everyday but this was when I was thinking about all the things I want to do and wish I could just do and get done now, quickly, like working for another hour to finish a project. Or staying up late reading just a little longer. Or staying out just a little longer. Or drawing for just a little while longer..... but it would be a mistake - it doesn't just mean a late night and feeling a bit tired the next morning - it means paying for enthusiasm for days after.  

[ramblingsofthechronicallyill]

Thin memories

I don’t feel that I have any memories left. It’s like they have been stripped away - or covered by a layer of fibro which I have to scrape off to even begin to sort through what is there.

Will they still be there if I can be bothered to search for them,

or have they gone forever?

Maybe it would be better if they have slipped away.

But does that then mean those years of my life didn’t happen, or where wasted?

[ramblingsofthechronicallyill]

The fibro fog descends

Sometimes I can feel the fibro fog descend. It feels most tangible to me the first time in happens after a reasonably good stretch - a period in which I’ve managed things quite well; I’ve spread things out, I’ve rested when needed, I’ve eaten well and generally things have been not too pressured. At least, I think that is the case for a while. But then it creeps up on me and the fog surrounds me. I can feel the world become slightly duller, like it is tinged with grey. Life is uninteresting, pale and quite frankly, an inconvenience. Conversation is too much, company is unwelcome, I just want to slip away unnoticed. Reading is too hard, thinking and making decisions requires too much concentration and doesn’t happen. Sometimes, part way through these days, I manage to get to a point where I think ‘surely I could do something now’ and so I make an attempt at something small, basic.

But once I’ve attempted it and quickly had enough, I stop and think back and wonder to myself why I bothered because inevitably I’ve misread instructions, I’ve forgotten something and will have to re-do it tomorrow anyway, I’ve done something completely unnecessary, I’ve misunderstood. If Ii really stretched myself and went out for some basic tasks I wonder if I should have driven for the fog that I thought had lifted a bit hadn’t really - it had just been a little less thick, but no less present.

It’s possible though, that the next day or a few days later, if I’ve rested well and begun to recover that the fog truly lifts. And it is actually noticeable - there is no question. The difference is astounding and I remind myself that I shouldn’t push too hard to convince myself the fog has gone. If I have to question whether it’s lifted or not, then it hasn’t.

[ramblingsofthechronicallyill]

a ‘how to’ for building a life with a chronic illness...

especially for when you seem to be getting better.

what to do when I know exactly what to do to build my career, my life, my savings but hardly any of it is actually possible, for me, right now.

what to do when I know exactly what to do to lose weight, to become healthier and to sleep better but it’s not physically possible, for me, right now.

what to do when I know exactly how to cultivate relationships & friendships in groups I am interested in but when there isn’t enough time or energy to do them, for me, right now.

plod along. that’s the only how to.

you just have to plod along slowly, knowing there are other ways, quicker ways, more effective ways - but also knowing they are not the option for you.

it is the only way.

[ramblingsofthechronicallyill]

Not sure I like the phrase 'wellness trend' but I like the idea of this gallery

[ramblingsofthechronicallyill]