Dear Party People

Dear Party People,

I want to say thank you from the bottom of my heart for coming to the annual summer BBQ hubby and I laid on last weekend. I know how busy all your lives are and it touches me deeply that twice a year you clear your diaries and ensure you attend. I know how hectic your lives can be and how easy it is to decide not to go to events. I really appreciate the effort you make to spend time with both me and hubby.

You guys probably don't realise that this summers party was the only thing that has kept me going since my health took an unpredictable turn (again). There were some days over the last few months, I seriously wondered if I could cope with what my life had become. The party was the light at the end of the tunnel and your company was needed for that night, so that I could just be Rachel and not hubby's disabled wife.

These parties give me something to look forward to, plan down to the last detail and try out new punch recipes. Even on the darkest day hubby could make me smile by telling me that one of you had said in passing how very much you were looking forward to it. 

We are very lucky to have such special friends, we have one that was taking part in a bike race the following day, who turned up straight from work in his uniform to make sure he saw us. One stayed until well past midnight despite being in a show jumping competition the following day. We had others who came before they went to work for their night shift or after they had finished on a late shift. Another special young lady spent the first 4 hours of her 18th birthday celebration with us. My closest friend despite being in agony with a back injury came (and spent more time than she should have with the pain being etched on her face). It takes a lot of effort to do this and I thank you for it.

Yes I am now exhausted and hubby is in the midst of a two-day hangover. It will take me weeks to get over that one night. It was worth it just to spend time with you all and just be me, not my condition. Most of the time when I see people it is because I have a medical appointment. There, I am no longer a person but a long list of medical complaints. To be seen as more than that for just a small amount of time is incredibly freeing. I feel in those hours almost normal again. I don't mind being exhausted when I have done something I have wanted to do, it's when I am exhausted for no reason I get wound up. It's the kind of exhaustion that no amount of sleep will cure.

Unfortunately my mask slipped during the night and a couple of you saw my expression change. One of you asked if I was alright, you thought I was angry or pissed off about something, I answered truthfully I had forgotten to take my night-time medication and I was now two hours without painkillers in my system. I corrected it straight away, what you will never know is that it will now take me a few days to get my pain levels back under control. It's not a case of popping my pills and everything being ok. Those pills have to be absorbed by a stomach that sometimes likes to go very slowly. I would be without medication in my system not for just two hours but anything up to six depending on how my stomach decided to play it. Luckily I also have oramorph that I can top myself up with but it's not the same dose as my standard morphine. 

I love the way no one bats an eyelid when I have a hot water bottle shoved down the back of my jeans on a warm summer's night. During previous parties I have sat with a heat wrap on my back. I do not shove it in your faces, I am quite discreet yet when my friends get up for a drink they will ask me if my hot water bottle needs refilled. So many people chose to ignore the fact that I am sick and whilst my friends may not understand what is wrong with me, they will show me simple kindnesses like that which make me realise they care. Small things like this go a long way.

One of the new people to be invited to our get togethers ( we have a small group that are always invited) asked me on Saturday night why I go to so much trouble to throw these parties. I told her it is a thank you to those who come and visit me or to say thank you to those who look out for my husband. My hubby, as regular readers of my blog will know, suffers with anxiety and depression. He had these conditions long before I got sick but as those of you with chronic health conditions will know, the stress we can cause our loved ones often leads them to have mental health issues or exacerbate the problems they already have. As a carer (which hubby is) it is important that you have support from your own wider family and friends. My husband is very lucky that he has a very good group of friends who really look after him. If they think he is stressed (more than normal) or just generally not himself they will contact me. Our party is our way of saying thank you to everyone who provides us support as a couple as well as individually. We never take your friendship for granted, we hope you know that.

I always think it is the sign of a good party when your guests are asking during the evening when the next one will be held. The date is already set in the calendar and again it gives me something to look forward to. I think in an alternate universe I would have been an events planner or wedding planner. There is nothing I like more than working my way through a list and having an event go like clock work. I pride myself on the fact that despite all the barriers and complications that are thrown my way I can still throw a decent party. However I shall let you into a little secret on Saturday morning when I woke up at 6am I wasn't in the party mood. In fact if everyone had rung and said they weren't coming I would have happily spent the day in bed. I just had no motivation and felt quite awful. Thankfully as the day progressed I got into the swing of things. Just as well as there was no backing out now.

Behind the scenes before most of you arrived, we had the usual drama of lighting the BBQ, why we have such problems I have no idea. The matches to light the firelighters were useless and kept snapping. Every time a match was struck a gust of wind came from nowhere and blew the bloody thing out. Things got a little heated between hubby and I, unfortunately for about half an hour we were the only thing generating heat. Eventually it was lit and we had managed to do it without a full-blown argument most unusual for us. Things usually get quite tense (it's me getting stressed) the day of a get together so it was nice that I was chilled out for a change!

There were no other dramas during the party preparation period. The list of jobs had been achieved and I adopted the mindset that you were all here to spend time with hubby and myself, not inspect the house. I know many of you tell me this time and time again but I have become cleanliness obsessed since getting sick and feel that I will be judged if the house is a state when you arrive. I know it's not you guys, it is me. I thank you for helping me see that you don't care about how clean and tidy the house is. You would rather spend time with me when I am feeling good, instead of shattered because I have pushed myself too hard.

I apologise most sincerely to those of you who made it through to the bitter end only to be bored to death by hubby's ramblings about American football. I wish all of you could have heard him singing, in his Frank Sinatra way!

Although I am still in recovery mode from the party, it has lifted my spirits immeasurably, better than any medication could. So I just want to say thank you for coming and thank you for being our friends.

Rach xx