Sunday, 21 November 2010

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 :)



  1. Glad you've had an opportunity to look at some of the HSP stuff: thought it may well 'ring bells.'
    Interesting too that you decided against the advocacy stuff. That was one of my initial reactions be a advocate, a warrior, pushing through it all to help other people and then I realized that that was something I needed to do less of --- at work Id spent so much time and energy do just that that it had prevented me from looking at my own needs.

    Purpose is good....whatever it is, a focus really helps to give you a reason to wake up ( I was going to say 'get up' but as we know that doesn't always apply in the case of PWME) but be careful it doesnt become too consuming. You have to be your main priority now ...and everyone in the PWME comuunity understands that.

    Hope the headaches etc reduce as you rest up a bit more (*)

  2. By the way I wrote a post about being HSP in July and got some very interesting comments, dialogue and feedback

  3. i'm going to have to look up the word advocate b/c to me the HRM group is an advocacy group. maybe on a smaller scale but actively supporting those w/ me/cfs. just as this blog does as well. whatever you wish to call are a generous soul!
    you are making me wonder if most of us have the hypersensitivity thing. i've yet, in my 15 yrs., ask another w/ this illness if they are very sensitive and they said "no". interesting. looking fwd. to reading more about it. i, too, was thwarted by parents calling me too sensitive or telling me i thought too much. even my husband, who is always supportive, says he'd hate to be inside my head w/ 100 hamster wheels going round and round.
    another provocative post. thanx barry! i'm a fan;)

  4. You've started a blog I see - yay :)

    You're right, advocacy wasn't the best word I could have chosen. Political is better. I don't want to spend what energy I have trying to convince people not to use CFS to describe their illness or to try to weed out those who don't have 'real' M.E. I'd rather just give them comfort, company and information.

  5. okay, think i am figuring this out...seems to be eating my comments if i write them on the other computer...

    so much of this was like reading something i had written about myself. that hypersensitivity to the emotions and 'vibes' of other people is so overwhelming for me, in the sense that i'm aware of it constantly and it's something else to take in whenever i'm around someone. from a very young age i remember crying to my mum 'there's something wrong with me, i have something missing that other people seem to have...some kind of protective layer'.

    been a bit of chat going around about this lately, interesting topic. are we more emotionally sensitive because we have more sensitive central nervous systems, or the other way around? or do they go hand in hand?

  6. KP,

    I think we are perhaps still a little away from knowing which is the cart and which is the horse. That 'nature vs nurture' debate applies to so much of humanity though.

    Another way I would describe my sensitivity is to say that everything has significance in terms of the way I process things. If someone is talking to me in a room with another conversation going on my brain seems to give equal weight to both and I struggle to tune out what others would regard as background noise. It also removes the automatic way of doing things that most people have. By that I mean that I struggle to do things unconsciously. So, even taking a bottle of milk out of the fridge is done with my full attention and treated just as significantly as, for example, writing an important letter.

    I'm not sure if that will even make sense to anyone else or if it's just my weirdness, haha.

    The sensitivity also means I can be annoyingly delicate at times. I can take silly things to heart and I can imagine rejection or insult where there is none. That kinda sucks :P

  7. This is so weird that this should come up now. thank you for the post - brave and heartening. I have for many years been trying to erase the "too" when i say i am sensitive.
    Read all the links and had a few tears this morning. Dont know what to do with it all, but somehow it hlps to know this is an o.k way to be. so tired of feeling like a freak all my life. It has created problems for me though and being hypersnsitive to my environment and feelings and those of others aroun me is soo exhausting- and of course even more so since M.E. Although now since being so ill i hav devloped a practice of meditation and quiet space for myself which because of the M.E i now allow (and others allow) myself to have.
    Please rest up Barry and take care.

  8. Barry, thanks for your comments re our visit. Don't worry about us, we are OK. We are sure we will see you next time, All our love, Judy & Rob.

  9. Reading ur posts is like reading my own thoughts sometimes Barry. I was amazed reading this about being "too sensitive", I am another to add to the list! Interesting that you & others here were told you were as almost a negative trait, that's how it was for me also. Thanks for the links. I agree being hyper sensitive can be wearing, is tough in terms of rejection, taking things to heart but now I'm going to see it as a more positive trait! Thank you x

  10. It's wonderful that so many of you can relate to this feeling of sensitivity, or 'otherness' as I sometimes consider it. I remember saying a few times in younger days that I felt like everyone had been given a manual on 'how to be' and I had missed out somehow.

    I don't think it's all easy to embrace and covet this element of ourselves and hopefully I haven't given the impression it is. I do wholeheartedly believe it's worth the effort in attempting it though :)

  11. Oh I was always told I needed to grow a thicker skin! It's not an easy trait to embrace but I'd rather be supersensitive than cold hearted anyday. Otherness, I like to call it "special"! X

  12. I have just found Phoenix Rising and am so very happy I did. I was going to read a lot more before posting, but I wanted to mention that I have found something that is helping with the headaches. I have been adding a bit of Apple Cidar Vinegar to water. I started with 3Tbsp in 3 cups per day but had to cut back when I got heartburn. Thank you for sharing your thoughts with us.

  13. I have been upbraided all my lfe for being "too sensitive" "too introspective" " too delicate" etc etc. Although i am no shrinking violet and am a confident, feisty woman.

    Learning to embrace my "specialness" (thanks VW)is going to be a large part of my healing process as is having what i want and need and not just attending to the needs of others (hard for us sensitives not too"
    I have ordered a copy of " The highly sensitive person" and cant wait for it to arrive. I am so glad you talked about this and have started this conversation. xx

  14. Suahizim - thanks so much for your suggestion. I will definitely try apple cider vinegar :) I've also ordered some daily Feverfew to see if that might have an overall impact.

    Justy - good luck on this journey :) Keep me updated as I haven't gone too deeply into the practical elements of living alongside ourselves and our sensitivity yet so I'm keen to hear whether you pick up some valuable practical insights.