Why is sorry the hardest word for me?

This has been another hard post to write and its been lurking in the draft section of my blog for a few weeks now. I haven't wanted to offend people that have genuinely reached out to me and stayed in contact. This post isnt about people who stay in contact with me, it's a post, well you will work it out from what I've written what sort of people its about! (Especially if you have been chronically sick for a while).

Since I've become sick a lot of people (and I mean a lot of people) have contacted me to say "Sorry", they're "sorry to hear my health is so bad", "sorry they didn't know I was so ill". Its very nice of them to contact me and say that they are sorry however I find it very difficult to respond. I mean what are you supposed to say? Being chronically sick doesn't come with any sort of handbook, faced with a "I'm sorry" leaves me desperately short of appropriate responses.

I really dont want to sound ungrateful, its very kind of people that I'm not in everyday contact with, to go out of their way to contact me and tell me how sorry they are that I am ill. So far so good, however I have found that once I've responded to their message, that's usually the end of any direct contact they will have with me. That's the part that leaves me scratching my head and wondering why. "Im sorry" seems to have turned into code for "I can't deal with chronic illness, I'm running away now!"

It leaves me perplexed as to what purpose it served to send me this message, if that is all you're going to manage? Again I don't want to sound ungrateful and unreasonable but why bother with all the fuss of making contact, if you have no other agenda than to ease your own conscience? I suppose having continued contact with me might be seen as daunting, as I now have a chronic illness and that my conversational skills must solely revolve around that topic. However if you think that you really dont know me. Yes having a chronic illness has changed me but it has changed me for the better not the worse. See the linked post below for a fuller explanation!

http://themyastheniakid.blogspot.co.uk/2014/03/what-makes-me-happy_24.html

I suppose other situations also seem to warrant this quick message approach such as a bereavement / divorce etc. Unless you've been in this situation you probably think I seem like an ungracious spoilt _____ ( you fill in the blank!) but when you live in social isolation it can be very hard to accept that you are just a fleeting thought for someone. Once messaged you can once again be out of sight, out of mind.

 I do have massive problems with the word sorry, it makes me feel that the person thinks, that they are in some way to blame for me being sick, which of course isn't true and isn't what they meant at all. I just wish I knew why their messages make me so uncomfortable and if I could just come up with a better response than "thank you for your kind words" or my other tactic of minimising my health problems. That's probably a very British trait I have innately acquired, you know not wanting to cause a fuss!

Or is my aversion to the sorry message more due to the fact that I know thats as far as it will go? I will receive their message of sorry only for them to disappear into the ether again. Even when I first became ill I found the "sorry" conversation a difficult one to deal with. I dont want people to feel sorry for me, I want them to understand what life is like for me. To appreciate that yes my life is dramatically different to what it once was but essentially I am the same person, just with vastly different life experiences. So perhaps its a mixture of not knowing how to respond to the message and knowing that its all our contact will entail, now that I'm seven years down the line with this illness?

I sometimes wonder if I have become too cynical when dealing with others? So many people disappeared from my life when I had to give up work that I am now very cautious when new people come into my sphere. I have become a lot tougher and sometimes less forgiving about the way people treat me. I think its a kind of self preservation thing, I will save myself the pain and frustration of being badly let down again. For further information on this please see my blog post entitled Friends and Chronic illness.

http://themyastheniakid.blogspot.co.uk/2014/04/friends-and-chronic-illness-or-life.html

It may amaze some of you (especially with the fact that I write this blog) that I am incredibly uncomfortable being in the spotlight. In a group of people I am always the loudest and the one trying to be the funniest but the attention isn't directly focused on me, my words are what is captivating the audience. My health problems or anything personal are not in the spotlight then, I am just Rachel. I sometimes wonder if I regard my ill health as some kind of personal failing never to be mentioned in company? Is that why the sorry messages are so hard for me to accept?

I am not only uncomfortable with the messages about how "sorry" people are but even worse are the ones that say "you're so brave" or "I don't know how I would cope in your position" I've even had the unfortunately worded phrase "I would kill myself, if I had to lead your life" said to me. How on earth am I supposed to respond to that ? I mean telling me that you would rather commit suicide than live my life makes me feel like you think my quality of life is worthless! My life is far from worthless. I do understand, well hope really, that it isn't what you meant. What you meant to say was "Rach I don't know how you do it, I don't know if I possess the inner resources to cope with everything that's thrown at you", however to be fair to them I would still probably feel uncomfortable with that one as well but it does sound better!

I did however accept a message of "you're so brave" last week, because for the first time ever I actually felt like I deserved that acknowledgement. I was home from the hospital and I was injecting octreotide without supervision. I was hand shakingly nervous and thats not a great place to be when you are trying to get up the gumption to stick yourself with a hypodermic needle! When I received the message I had just injected on my own, hubby was at work. The message made my day because I felt brave. I felt I warranted the praise. I wasn't just living my life as I normally do, I was doing something above and beyond that.

Please can someone tell me how are I am  supposed to respond to the sorry messages and the I don't know how you cope messages? Because I really don't know how to.  I cope because I have to! I figured out a very long time ago that I could waste the rest of my life wailing about how unfair it is and why me? and I decided that I wasn't going down that path. Yes I still have days where I do wobble but I try to remind myself that whatever is making me wobble is transient.

On the whole I want to believe that people are well meaning. The sorry messages are sent to let me know that they have been thinking about me. The other type of comments I will regard as badly executed compliments. Even if they both leave me feeling uncomfortable and at a loss for words.

The world of chronic illness would be so much easier if there was a handbook that explained how to respond to these situations.

My boy - Frankie

Octreotide Trial one week on.

Sorting my syringes for the day.

I'm one week into my octreotide trial and things have not  been going swimmingly. Over the course of the last week I have been developing some nasty side effects of the gastrointestinal kind. Last night I was awoken at 230am and over the course of the next 6 hours I barely left the bathroom.

Over the last week I have been managing to inject myself 2-3 times a day. I was struggling with it initially, not because of having to inject myself but the issue with eating regularly. I learnt years ago to avoid post prandial hypotension to avoid where at all possible eating lunch. At school I would struggle to stay awake after lunch. At university I would regularly fall asleep in the lecture theatre and snore, loudly. This issue followed me into my workplace and to avoid falling asleep in front of a room full of new employees, avoiding lunch was the only thing I could do.

My post prandial hypotension could almost be described as a kind of narcolepsy, I can't keep myself awake. I have no choice in the matter but to go to sleep. Fighting it makes me feel extremely ill. My eyes roll to the back of my head, my speech becomes slurred and I can not put off the inevitable, I go to sleep. My blood pressure drops so low I awaken confused, not knowing where I am. Nine times out of ten I will initially believe I am back at my parents house, a place I haven't lived in since 1996. My confusion can last a few minutes to an hour and it is terrifying. Out of all the horrid symptoms I endure this is the worst. It will reduce to me to tears on a regular basis.

As you can imagine, after last night, I was deflated ( pardon the pun) , exhausted and in pain. However due to the amazing results I had experienced I wasn't ready to throw the towel in just yet. I was wobbling psychologically and feeling a bit sorry for myself but I was determined to carry on.

After what can only be described as a hideous night, out of the blue my consultant rang me to find out how I was doing and to make arrangements for the tilt table test I was due to have on Tuesday 22nd April. On hearing of the disastrous night I had endured, he decided a tilt table test wasn't going to be a good idea. I have been advised to halt the injections today (Monday 21st April) and resume tomorrow starting off again with one injection a day. I am to continue with one injection a day until I ring his secretary on Friday and let her know how I am doing and a decision will be made from there.

Some of my cyber friends are on this medication for PoTS alone and have been advised not to take it at meal times as there is an increased risk of side effects - wind (gas) , bloating, diarrhea, constipation and nausea. With post prandial hypotension the whole point is I take it with meals. However I am suffering with all but one of the side effects - constipation. How last night I wished that I was suffering with constipation!

I will see how the week goes and maybe if there is no joy I will use the drug to treat my PoTS rather than post prandial hypotension. As the drug works so well I am happy to currently persevere as long as I don't have a repeat of last night.

It maybe that I can only tolerate one injection a day without incurring the wrath of the octreotide god. If thats the case my post prandial hypotension is always at its worst at lunch time for some reason. If I could obliterate that symptoms with little or no side effects that would be an enormous leap forward.