Firstly let me apologise for there being no blog post last week, it’s the first time in a couple of years that there hasn’t been a post published.


The last week has been pretty tough for me both emotionally and physically. Shingles has kicked my butt before contracting shingles I was pretty naive about it thinking it was just a painful rash. I couldn’t have been more wrong, it has wiped me out completely. I feel constantly as if I am at the tail end of a nasty dose of flu, exhausted no matter how much I rest / sleep and just pretty sorry for myself. I am also suffering from nerve pain which runs from my back to under my right breast, which has been intensifying over the last few days.  From the various websites I have read I can look forward to feeling shitty  for 4-6 weeks.


Also last Wednesday was our friend’s funeral, I am glad we attended and got to say goodbye but the grief again has hit me like a sledge hammer. I was left pretty low on Thursday and it’s a feeling that won’t shift. There is an Andrew shaped hole in everyone who ever met him lives, that will never be filled.


I have been trying to rest and recuperate ever since. Presently I have lost my blogging mojo, I am hoping as I begin to get over Shingles it will return. I just need to learn to pace myself and remember I have been “normal” sick on top of chronically sick so hence the very short blog post.



For the last few weeks I have been left wondering how you fix something that seems broken beyond repair? How do you move past the anger and pain? How do you get to a new normal? I am left scratching my head trying to work this all out. I have had to deal with so many broken things, body, mind and relationships that have fallen by the wayside. When do you say enough is enough?

Before anyone psychoanalyzes this one, hubby and I are fine, perfect in fact. This year he has provided me (as he always does) with unwavering support through this difficult year. I can’t thank him enough for that. There have been days where he must have been almost hysterical with fear because I was so sick but he stayed strong. He made sure I knew I could count on him when the chips were down and there aren’t many people these days that I could say that about.

For 9 years I have had to deal with a broken body (well since birth but it really raised its ugly head 9 years ago) and on the whole I am fine with that. Of course there are days when I ask “Why me?” or I think that I can’t possibly go on but I do. I can forgive myself those moments of weakness or perhaps vulnerability is a better word. Even though pain wise this year has been horrific I am still managing to do things to make myself happy and enjoy life. I think that is something to be proud of.

I have in the last nine years had to deal with many broken relationships. People I thought would be friends with forever have dropped by the wayside but not before treating me like crap. I should take some of the blame here, not because of ill-health but for allowing people to treat me that way. I am an incredibly loyal friend and will excuse bad behaviour up to a point. However at some point a line in the sand has to drawn, it just I can take a bloody age getting there. When I do though the fallout (pun intended) can be catastrophic, people don’t like being confronted with their bad behaviour. I am not for one instance say this believing I am perfect, I am not. When bringing up the subject I always say “I am sure there are things I must have done that have annoyed you”. I give them the opportunity to address issues so it’s not one-sided because if things are ever going to be put right the exchange has to be honest.

Maybe because by the time I deal with the situation there have been a series of events, such as not contacting me unless I contact them, not coming to see me (I can’t go to see them as I am virtually housebound although I would love to), being rude or overly critical etc, etc I have the examples to hand, they are on the back foot unprepared for the conversation? Because for so long I have let things slide and given them the benefit of the doubt. I know that something must’ve happened for them to change the way they have treated me. However from my side it seems the more I do for someone, the more they expect, then because I am forever trying to please them, I get taken for granted and the friendship gets abused. My inability to nip bad behaviour ( what else can you call it?) in the bud seems to give them the green light to walk all over me.

I hate confrontation with those who are close to me, I am too worried about hurting their feelings that I end up not expressing my own. I wonder if it is because of all the bullying I faced during my childhood that I don’t want to rock the boat and tell the person what they are doing is not ok? I can be loud, brash and seem to have endless self-confidence but really I am an anxious hot mess a lot of the time. I worry over stuff that shouldn’t be worried about, I worry late into the night about things that haven’t happened, I can get into a rut of worrying that can be a difficult cycle to break. I know it’s not healthy to be anxious or to be afraid of expressing what you want or need. Most of the time I am not worried about what I will say but what will happen once it’s been said, as the words can not be unsaid. I should however start putting myself first and starting from now that is exactly what I am doing. I will no longer have people riding roughshod over my feelings in an attempt to make themselves feel better.

At the moment I am only filled with anger, I know that is clouding my judgement. The extent of the anger only reinforces the hurt I have felt and the fact that I do care deeply about this friendship. If it had been anyone else they would have been told to go once this pattern of behaviour seemed to establish itself. I have asked myself the question over and over did I do something to deserve this? Have I ever done something to deserve this and does it make me a bad person if I cannot think of anything but the times I have bent over backwards and supported you?

In some cultures when an item is broken like a china bowl, they fill in the cracks and cover the repair with gold leaf, to make it unique and more beautiful than it was before. I wonder if that is possible with human relationships as I am not without hope on rare occasions.

So I find myself now in a situation where the conversation has been had but now I am unsure of where we go from here. It no longer feels the same which is something I never thought I would say. Do I concentrate on the good times which account for 98% of the time and ignore the 2%? Is it worth resuscitating, this hollow corpse of a friendship, which it has been for a while or now because apologies have been made do we forge a new relationship? I am unsure that I want to open myself up again to the risk of being hurt so badly, picked up again only to be dropped when something better comes along? Do I try to forget what has happened or do I forgive but never forget? Does shared history count for anything? Is I am sorry, enough?  When is it broken beyond repair?

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!

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.

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