Normally at this time of year I would take a long look back at the previous 12 months and do a summary of all that has happened. This year however its more of a case of 2019 don’t let the door smack you on the arse as you make your way out. The year started with the lowest of lows and has ended with some highs. I must truly count my blessings as some of us haven’t made it through this year and will not be seeing 2020 in. It is sobering when a person you have known through social media passes away and at the tender age of 25. It makes you take a breath and realise a lot of the stuff that pisses you off is simply #firstworldproblems.
On Saturday I posted this photo to my social media feeds. I had my Christmas jumper on as we were getting ready to take Dembe down to meet Santa Paws.
Now this blog post is not having a go at anyone, it is just pointing out what people interpreted from the photo and what was actually going on. On posting I had a few comments stating how well I looked and that people hoped I was having a good day. They were really nice comments / compliments but the truth was I was in 7/10 pain with my joints ( that only eased up a little when sat perfectly still) and every so often I had a pain in my abdomen that felt like I was being stabbed. It just goes to show when other people think you look well there maybe a whole host of things that the few seconds in front of the camera didn’t show.
I am the face of invisible illness, unless I have ptosis or bruising / cuts on my face most people on seeing this photo wouldn’t know that I have been sick for the last 12 years. That I gave up my career due to being off work so much that I was ill-health retired. I don’t think I look very well at all in this photo. Yes I have some makeup on but I look as white as a sheet. To me I look shattered, I am putting a brave face on because all week we have looked forward to seeing Santa Paws and there was no way that I wasn’t going to accompany Jay and Dembe on this trip. I didn’t even tell Jay until we got home how much pain I was in.
When people commented that I looked well, I just said thank you. I didn’t want to have to say “well I may look ok to you but my pelvis, hips, knees and lower back all feel like they have been replaced with metal pikes and are grinding against the joints”. People ( many of my friends have invisible illnesses so get this) see a photo and decided that actually you can’t be as sick as you say you are. They are incredulous that I would drag myself out of the house when in as much pain as I was. I do it not because I am some kind of hero or that I am attempting to prove some kind of point, I do it because I want a life. I want to be able to do things with Jay and Dembe. Jay only gets two days off a week so if we don’t do stuff on those days then I don’t get to go out until the following week, it is as simple as that. Unless I was totally incapacitated I was seeing Santa Paws and getting Dembe’s photo taken.
The problem with invisible illness is precisely that it is invisible. That means there are no tell tale signs that you can see that show that my autonomic nervous system is wonky, that I have Ehlers Danlos Syndrome or a host of other medical conditions that have come along for the ride. There are no neon signs above my head pointing out to the general public what is wrong with me. It isn’t just me that has to deal with not looking sick when they have a chronic health condition there are just so many of us who are fighting battles with our own bodies that most people have no clue about. It is exhausting and at times it feels like it is a constant battle to get people to understand or believe how much I am impacted by my medical conditions.
I knew why my joints were so bad on Saturday / Sunday / Monday and it was to do with the changes in air pressure with a storm approaching the UK. I spoke to another friend who has arthritis in her hips, on Saturday and she was in pain as well due to the changes in air pressure. We laughed that we were so bloody predictable. I should imagine most of my chronically sick friends were also struggling with the increase in joint pain despite looking fabulous.
Our visit to see Santa Paws was thankfully very short, we were in and out of the shop in less than ten minutes. All in all I was probably only out of the house for a maximum of half an hour. As soon as we got home I was sat on my electric heated throw to try and provide some relief from the pain in my hips and knees because I was maxed out on painkillers and they weren’t doing anything at all. When my pain is related to air pressure pain killers just don’t work. The only thing that does is the application of heat, it won’t get rid of the pain completely but it will drop it down enough to stop me wanting to cry with it.
Dembe had some wonderful photos taken.
He was a good boy and sat still for his photos. He does love a good face rub or an ear scrunch so Santa Paws hit the spot!
Despite the pain the trip out was more than worth it when we looked at our phones and saw the photos we had captured. The bottom photo is the official photo from the shop that they emailed us. Even if I was in that much pain again I would still go out and get the photos done. Sometimes you just have to keep pushing so that you can get out of the house. I know for me there are times when I can’t get out of bed, the pain / exhaustion is just too much. I was lucky it was a day when I could push though. I would have been gutted if it had been a day when I couldn’t and we had missed this opportunity.
What the photo doesn’t show is from the time we got home ( around 10.30am) until 3.30pm I did nothing other than sit on my heated throw. I only moved when I went to the toilet. Jay got me my drinks and something to eat. I stayed in my little corner to recharge my batteries and to attempt to get the pain under control. A photograph doesn’t show you anything other than those few nano seconds it captured when it was taken. I wish more people understood that.
I am the face of invisible illness.
Despite outward appearances, the decorations are up and I have been working on Christmas sewing projects, I am dreading Christmas. I know it is going to be hard and emotionally draining. No matter how hard I try not to make a big deal out of it, I can’t get away from the fact this will be the first year without Frankie and Mollie and will be the second without Willow ( our Weimaraners ) and it feels like a knife to the heart.
I feel guilty that I should be happy as we have Dembe and it is his first Christmas with us. Believe me I am but it doesn’t lessen the pain of knowing for the first time in 16 years our home will not have a Weimaraner in it this Christmas time.
Travis our first Weimaraner arrived home on 13th December 2003, he was our very first dog as a couple. Although I had been brought up with dogs, budgies and Hamsters, Jay had never been allowed anything more than fish, so this was a huge deal and we loved it. Mollie arrived in January 2004 and for two years we were very happy, although Travis had been sick since he was 6 months old from an un-diagnosed illness which we now believe was Lung worm. He passed away 10 days after Willow and Frankie were born in our spare room ( now Jay’s room) in 2006. It broke our hearts and I have never got over it. There are still days I can’t say his name without breaking down and it has been 13 years.
Although we knew that at age 14 and 12 Mollie and Frankie weren’t going to last forever. It still came as a terrible shock when the end came and to lose Frankie on 29th December followed 7 days later by Mollie passing away from a catastrophic stroke on 5th January after 16 years of having dogs we were suddenly left with nothing. We were incredibly lucky that I found a breeder with 2 male Labrador puppies available and that could come home by 11th January. It was quick and I know some people need more time, I still wonder now if it was the right thing to do and after all the joy Dembe has brought us I have to say yes. Although it was incredibly difficult looking after a new puppy whilst in the midst of what seemed like never ending grief.
Jay and I have spoken about the fact that we don’t remember very much from this year. It isn’t until the summer that we actually start to remember things that have happened in 2019. For the first 6 to 7 months everything was a blur. I am so grateful that I started The Dembe Diaries and took so many photographs as his puppyhood was over in the blink of an eye and we have few memories about it. I actually have no idea how I have managed to survive this year. I didn’t know it was possible to survive such physical and emotional pain and still live. There were times I wanted to fall asleep and never wake up but I knew Dembe needed me and Jay would never cope with losing all of us. I am sure there were days that Jay felt the same but we were both so wrapped up in our own grief and it was just too much to attempt to put what we were feeling into words.
Some people might not get this, they may not understand how you can have this level of grief over an animal and that’s fine. I actually feel sorry for you if you have never had an animal in your life that you have loved more than anything else in the world. My bond with the dogs was much stronger than a lot of peoples would have been because I spent nearly everyday with them ( other than hospital admissions and medical appointments and there have been a lot of both). Even writing this post has had me in tears at times.
So I just feel like Christmas this year is about going through the motions. We keep geeing each other along in the hope it gets us through. We are planning on spoiling Dembe and making it about the three of us. I am hoping a fake it until you make it approach may get me through the festive period. Jay already confessed that he is sick of Christmas already ( not brilliant when you work in retail but highly understandable) the forced frivolity and pretending that you are going to be having the best Christmas ever has wound him up before the season of goodwill has really begun.
I am normally really organised, I would have sent out our Christmas cards already. Posted the parcels that needed sending to family today. I don’t know when it is getting done this year as neither of us really gives a shit. We have treated ourselves to a Marks & Spencer’s food order, only a very small one otherwise no Christmas food would have been bought and we would be having beans on toast on December 25th ( it actually wouldn’t be the first time as one year both of us came down with flu). Oh and by organised I mean that every Christmas present would have been bought and wrapped by now. This year I decided I would make them all….I am still making them and only some are wrapped. I just can’t whip myself into a Christmas frenzy because I just don’t give care if I am honest. Maybe later in the month I will feel it. But at the moment I am the Grinch. Christmas can go f**k itself currently.
This year we are at sixes and sevens as Jay’s job has changed. Since 2008 / 09 he has had Christmas Eve off to help prep the food / house for Christmas day. His old job meant he wasn’t needed in work, his new job means he is. So the first time in a decade I won’t have my trusty side kick with me on Christmas Eve. It is going to be strange, no Weimaraners pushing me off the sofa or leaving the back door open and no husband. It just adds to the sense of massive change this Christmas brings. I will have to find my Muppets Christmas Carol DVD and sit and watch that.
We have changed the dresser over to our Christmas Emma Bridgewater Pottery display. Out of everything that is the one thing that gives us joy. We got the majority of our Christmas items when we took a day trip to the factory in 2017. It was a very special day, even though I did worry myself sick about leaving the dogs ( with a sitter, thank you Imogen) for that amount of time. We also got to meet our friend Emmey and her husband Mike ( and their doggies) which was a really lovely add on. This year we decided to spread some of the pottery over onto the bookcase as well. I couldn’t bring myself to take down the dogs photos to make room for our Christmas display. It probably sounds silly but it just felt wrong. I am pleased with how the lounge is looking and if anyone visits we look the epitome of Mr & Mrs Christmas…..even if we don’t feel like it.
We are trying to make it special for Dembe as a way of getting us through it. On Saturday we are taking him to meet Santa Paws and getting his photo taken. It does make me laugh a little bit as that is something we would never have managed to do with the Weimaraners unless we took them down separately as they were really badly behaved when they were outside the house. Dembe is an angel but to be fair it is much easier training one dog than trying to train 2 or 3 . Plus we have invested so much training time in Dembe, taking proper classes run by a professional rather than the rubbish we attended in the past with Mollie and Travis where we learned nothing as how can you get individual attention or help in a group of 15 dogs plus going around in circles at a village hall. We said right from the off he had to be trained and be exceptionally well behaved when working and that is exactly what we have got. But then you get back what we put in and every day is a school day with Dembe.
Believe me I am not anti Christmas, I normally like Christmas – I am not a Christmas lover as generally I find it never lives up to the hype. But I love spending time with Jay and well it used to be dogs plural but now just dog. We have always done what we wanted at Christmas . This year though its overshadowed with the sense of loss. Hopefully Christmas 2020 will be better, easier less painful. Just this one is going to hurt. It is the not knowing how much it will hurt that is bothering me, which is why I am dreading Christmas 2019.