Sensitivity and Purpose

Sensitivity and Purpose. Strange title for a blog post, right? Sounds like a Jane Austen novel ;)

The reason for the strange title is that I want to address two different areas in this one post. Before I do though, I want to thank you all for the comments left after my previous post. It's not always easy sharing the innermost elements of ourselves and I was really touched and inspired to continue by the kind and thoughtful comments you left. Thank you.

So, sensitivity first. I was going to post a long description of the concept of 'highly sensitive' people but I don't think I can do any better than has already been said HERE so please read that first.

All done? Interesting, isn't it? Even though I've always been kinda proud of being sensitive, I've also always felt it was a bit of a burden verging on a character weakness. The truth of the matter is that I've been told more often that I'm "too sensitive" than it being made as a compliment. I now think that is just as dumb as all the times I was told as a child that I "think too much". Now I've read more on the subject of highly sensitive people though, I'm proud to be amongst that group. I should clarify though, this doesn't make me Ghandi. Not by a long shot. I still have moments of insensitivity, of being blunt to the point of unententionally hurting others, of saying the wrong thing at the wrong time, of misjudging the acceptability of my warped humour and of not thinking through my words or deeds.

Aside from those lapses though, being sensitive has lots of positives. Some people are very good in a crisis as they instantly see what practical steps should be taken. Those people are usually invaluable as a friend as they roll their sleeves up and clean up the mess. I'm not really like that. I always think more about the emotional side of a situation. How must the person feel? How can I reach out and show them I am aware of those emotions? How can I be of support? That sometimes leads to the male trait of trying to fix them even if they haven't asked for it but nobody is perfect, haha.

Another positive can be my heightened awareness of 'vibes'. I seem to able to sense unhappiness in others, sense when they need a kind word or an outlet to talk, sense when there is danger in the air etc. Being on alert all the time like this is tiring though.

I'm still working out all the finer details of this sensitivity lark but so far I'm leaning towards accepting and embracing this part of me. It's who I am, for better or worse.

Now, let's move onto purpose!

I'm not someone who is passive. If I do something, I do it almost obsessively and put my whole being into it. Otherwise I just don't bother. So, when I got ill and started to research what might be wrong with me, I knew I wanted to find a way of making a difference somehow. Of fighting for the cause. Especially as ME/CFS sufferers are treated so appallingly by society and the medical establishment (by and large anyway - not always).

I thought about turning my anger and frustration into doing advocacy work but it just isn't me. I have the utmost respect for all the warriors out there who are fighting hard for a fairer deal for ME/CFS patients but it isn't where my strengths lie. My search for 'purpose' therefore continued.

As I've mentioned previously, one of the most significant things to happen to me lately is to gain an appreciation of the benefits of pacing using a heart rate monitor. I am forever grateful to the lady who brought it to my attention and I now embrace the concept wholeheartedly. In the absence of finding a cure, I strongly believe this is the number one way to live alongside being ill. This led me to think about the diffference this knowledge could make to others who are having their activities cutailed by illness. If such a simple technique could free us from either pushing too hard and causing a worsening of conditions or being too afraid to do anything and wasting away it would be priceless.

And so, the 'Pacing with a Heart Rate Monitor' group was born. It's early days still and it will grow slowly but my aim is to create a central information point where the latest research and real-life experiences can be easily accessible.

Click here to join the group on Facebook

Having found a purpose is amazingly beneficial. In my own small way, I can offer some value to the 'community'. Along with providing all the information, I can provide support, encouragement and understanding to others who join the group. I'm very excited about the potential attached to it.

Of course, all this excitement and activity comes with a cost for me. I think I probably have been over-stimulated and over-active in setting this up and being so enthusiastic about it. This weekend my girlfriend's parents came to visit and I was really looking forward to seeing them as they are such amazingly kind and warm people. They have also had their own challenges recently and I wanted to let them know I supported them. Alas, I was too sick to get out of bed and spend time with them. My headaches have returned with a vengeance and my light sensitivity is back so I'm back to staying in the dark and wearing sunglasses indoors. If you read this, Judy and Rob, I'm really sorry I couldn't spend some time with you.

I'll find the balance though, I'm sure, between having a purpose, supporting others and listening to my own needs.

take care everyone :)

Barry

Confusion & Unpredictability

It's unfortunately been a while since I've been up to adding a new post. My intention was to start getting into some detail about how I was planning to treat my illness but my health has taken another downturn lately.

Before all this started, I had some problems with face and head pain in the form of TMJ (tempero-mandibular joint ... the joint that holds our bottom jaw to our skulls) inflammation and cluster headaches. Alas the cluster headaches seem to have returned. This isn't entirely surprising as, by their very definition, cluster headaches come in...well...clusters. You get them everyday for a while and then they go for a while. They are also known as 'suicide headaches' and, now that I've experienced them, I can vouch for that description not being too dramatic. I can completely understand why sufferers kill themselves, or maim themselves, to get rid of the constant and extreme pain. Best description I can give is a hot poker being stuck through the eye. Not nice. It actually creates a strong desire to gouge out whichever part of the head/face is currently painful and sufferers have been known to cut chunks out of themselves in an attempt to stop the pain. Thankfully I'm mostly too weak to go in search of sharp objects ;)

Anyway, all this means that my plans have had to change slightly. I didn't want to put any other prescribed medication into my body but I'm reluctantly going to have to start taking beta blockers again as they seem to be the thing that gives me some relief. Apparently something to do with constricting blood vessels and quietening down pain receptors. I got a bit spooked when the headaches started up again as they did so at the same time as my new supplement regime. So, I temporarily stopped taking anything else for a few days until I worked out it was the return of cluster headaches. Now I'm gradually working back up to full dosage of the supplements and I'll post details of what I'm taking in due course.

Which leads nicely onto what I want to talk about next. I thought I was being so very smart by reading up on every supplement and drug under the sun to see what the latest research findings were and what might benefit me. Unfortunately it hasn't quite worked out as planned though. The more I learn, the more confused I become. For example, imagine you never did any research ever and your doctor said to you: "take these pills, they will make you better" ... all nice and simple, right? Now imagine you decided to do a bit of research on those pills and found lots of documents pointing out they were dangerous and ineffective and then lots of other documents saying they were the best thing ever. Who to believe?

With a few exceptions, I can now make convincing arguments about why something is beneficial, pointless or potentially damaging. Very frustrating for someone like me who works with absolutes and needs black and white answers. However, I need to take something rather than just letting nature take its course so I have to weigh up all the conflicting evidence and bite the bullet. I will and I have. More on that in a future update.

Finally, my symptoms now include light sensitivity and noise sensitivity. The sound of my cat cleaning itself or the washing machine has actually become painful to me and the light is a problem too, even at low levels. All this means I am now having to use sunglasses and ear plugs indoors and will probably have to move into the spare room where I can avoid the everyday noises and activities of the household. I really don't want to cut myself off from what's going on in my own house but I think I'm going to have to take notice of these symptoms and act accordingly. Sorry I don't have anything more positive to report for now but at least the unpredictability of this illness keeps things interesting!

take care,

Barry

A Little Bit of Everything

The past couple of days have seen me return to how I was a few months ago. I seem to be back to being hit by overwhelming bouts of tiredness that require me to immediately rest/sleep for long periods of time.

I've been here before so I know how it works. I get sudden collapses of energy and brain function and I go into 'shutdown mode'. I sleep for crazily long periods of time and wake up unrefreshed. I then try to do stuff and then, after an hour or two, get hit by another overwhelming wave of fatigue.

I find it interesting to observe my symptoms and how they evolve or regress over time. As well as trying to find the best way to live my life and retain some energy, I also have one eye on theories/remedies/case studies. This means I spend a fair bit of time reading up on what's being said out there in the world about what seems to be afflicting me. Today, I want to share a few articles that caught my attention recently and add my own comments where possible.

Firstly, dysautonomia.... more info here - I mentioned in a previous post that my personal theory (and, at this stage, theories are the best we can work with as there is no medical consensus) was that my hypothalamus was not doing what a hypothalamus should. This is a part of the 'old brain' (i.e. it was there even before our brains evolved into the amazing machines they now are) and regulates all the non-voluntary stuff like breathing, temperature, heart rate, blood pressure etc etc. In biological terms, homeostasis. It's still my own view that all those automated functions are awry within me but, until there are sophisticated tests done on a great number of living brains it can only be supposition.

Having a wimpy supply of energy and having to decide what to use it on is difficult to explain to others who haven't been in that position. We all get tired and modern life is full of stress so I completely understand when people equate it with tiredness. Of course, it goes way beyond that but I can't expect complete empathy from people who haven't been in that position. Although it's perhaps a little cheesy, a woman with Lupus used a bunch of spoons to explain this to a friend... see here

I've always been someone who enjoys my own company but I've noticed that noise sensitivity has become more of an issue for me now. If I'm focusing on what is making the noise it isn't really a problem so I can still listen to music or watch movies but if the noise is 'in the background' it drives me crazy. I tend to spend a lot of time wearing headphones even if I'm not playing anything through them as I find they dull out background noise. More on noise sensitivity here

Sleep. We all know how vital it is and we all probably don't get enough of it. Again, modern living brings with it other fun stuff like stress and sleep deprivation. Imagine though, never being refreshed by sleep. That's kinda the position I'm in and it's very frustrating. The desire and need to sleep still exist and I am able to sleep but it seems to serve little purpose as it doesn't refresh me. One of the theories around this seems to be that it indicates the person isn't entering the restorative cycles of sleep. It makes sense and I have noticed that doctor-prescribed sleeping pills have allowed me to sleep deeper and feel more refreshed afterwards. Unfortunately they stop working for me after I take them for a little while though. I found an article on sodium oxybate here intriguing as it follows the same general theory and mentions a drug that seems to address the problem. I have heard the side effects can be pretty unpleasant but I am definitely following this story with a lot of interest as restful sleep would be almost impossible to resist for me.

Recently, I've been interested in reading about the experiences of others in terms of how their loved ones deal with them being ill. There are some real horror stories out there and unfortunately it seems to be mostly women who have uncaring male husbands/partners. I am exceptionally lucky to have a wonderful girlfriend who is completely supportive but even I have times where I feel like I am a burden to her or that I am not being fully understood by her. I therefore cannot imagine how horrible it must be for those who are ill and whose partners are unsympathetic, mocking or disapproving. There's a decent article on the subject here

The articles I've posted are just a small sample of the 'community news' I try to keep up with. Alongside reading medical journals, it helps me stay informed. I'm not the sort of person who passively accepts that doctors always know best so I take the time to be as well informed as I possibly can be on the subjects that impact my health. I hope some of the information I've shared has been helpful to others or at least interesting to read :)

Take care,

Barry