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.
Jay (or Mr Myasthenia Kid as you know him) have been struck down with the lurgy. I am not as ill as I was at the start of the year when I had a chest infection and sinusitis. But it is pretty close. For that reason there will be no blog post this week – it hurts to even tap on the keyboard.
I will leave you with my gorgeous pup Dembe, who despite me feeling as rough as a badgers arse still makes me smile.
It has been a manic few days and it has left me utterly exhausted. I have seen that many people I could almost be accused of being a social butterfly. All I know is today I feel like the batteries have been taken out and I am working with my emergency power supplies only.
We have started back at dog training and we are going twice a week. On Sundays Dembe has his agility training which he loves and is doing so well at. On Tuesdays he has his obedience training which he loves in a different way. Both tire him out mentally as well as physically. The problem with the dog training is that there is just one day in between which doesn’t quite give me enough time to bounce back if I am then adding in medical appointments or getting my hair done or seeing people.
Tuesday was my final medical appointment out of a string of 4 over the last 3 weeks. One medical appointment in a week is enough to knock me for 6. 4 in the space of three weeks has sent me crashing. It’s hard to describe what you mean to people that aren’t sick. For me it means I wake up feeling more tired than when I went to bed. It is an effort at times to even take a breathe in. As the day wears on I feel like I have been at the gin, without the fun part, so my eyes are bouncing around all over the place and I feel disconnected from my body. I look very pale and run down but inside I feel like death warmed up. I can struggle to maintain my body temperature so that I am freezing cold ( even in the height of summer). I can get emotional over the slightest thing, lose my temper usually with inanimate objects that aren’t doing as they are told because my hands won’t work ( so I am continually dropping them ) . It makes it hard for me to complete anything that requires attention to detail.
Add in me making the stupid decision to make all the Christmas gifts for family & friends but not starting the majority of them until a few weeks ago and I feel like I am on a hamster wheel that I just cant get off. There is no down time as not doing something for a day puts me further behind but this week I have had to take a step back because I am so tired I can’t work without making mistakes. Doing nothing makes me feel like a failure and that I don’t contribute anything to the world…which is why I have been teaching myself how to crochet so that on the days I can’t sit at the sewing machine / embroidery machine I can do something else curled up on the sofa or in bed.
The stupid thing is I keep adding to this list of things to make which is then piling on the stress. I will get there but I keep having panic attacks when I see someone helpfully posting on Facebook that there are X amount of days / weeks until Christmas. I really need to learn to be kinder to myself as even on the days when I have felt drained I have still pushed myself to do just a little something. I like to break tasks down so that I when I come to make an item it is all ready to go and the amount of time it will take to get it all together will be massively reduced.
So like yesterday I decided to have a go at making the Doggie Christmas Stocking from Sweetpea Embroidery. Because I know I need to make at least two of these for gifts, as I prepped the fabric pieces for the first stocking I did the second. It took me longer, obviously but Jay was home and was doing all the running around for me so all I had to do was sew. When or if I manage to get to the embroidery machine today all I will need to do is stitch it out as everything is ready and cut to size. This is how I have to do all my projects, I do all the prepping one day or over a couple of days and then when I make the item I can concentrate solely on that rather than expend energy I don’t have. It is very rare for me to be able to start and finish a project no matter how small in a day. As my actual time I am able to work is so severely limited. I can’t sit at the embroidery machine or sewing machine all day, I am deeply envious of those who can. I am in pain within 20 minutes, so have to take regular breaks. I have an alarm on my phone that goes off every 20 minutes to ensure that I get up and move / change positions. Otherwise it will cost me £45 at the physiotherapist whilst she tortures me ( in the nicest possible way ) to correct the damage I have done to myself.
It’s the same for material prepping. Everything is done in stages. Many times I make cardboard templates to help me with ensuring I cut out the right size fabric pieces. This helps with cutting down waste and ensures that even if I am not thinking straight as long as I have the right template ( sometimes that isn’t as easy as it sounds) I can be trusted to cut my fabric out. Obviously making templates adds more time to a project, it tends to only happen if I know I will be making more than one of an item. Basically the majority of my life is spent breaking down tasks into smaller manageable chunks so that I have the energy to be creative and give my life some meaning.
Currently there are boxes everywhere with bits of fabric / templates / batting all cut to the correct sizes waiting to be embroidered and sewn together. It will all get done but it will be done slowly and in the best way that I can pace myself.
I am so exhausted today as Sunday I had two visits from friends who had come to collect their table runners that I had made them, one in the morning, one in the afternoon. It was great to see them but we also had dog training in the middle of the day.
The table runners had taken a lot out of me getting made and I had been stressed out about getting them straight and sewn together nicely. I took a lot of time over it. The top stitching alone left me needing a nap afterwards last Friday. I sewed the rest of it together on Saturday afternoon.
Monday I had my hair done for the first time since August, it needed done desperately as I had already used my dressmaking shears to hack a sizeable amount off the fringe ( bangs ). After my attempt at hairdressing it was even more important that it was sorted out. I am lucky that I have a wonderful friend who does my hair for me and knows I find the whole process exhausting. Doing it at home means it takes 2.5 hours instead of 4 hours being overstimulated by lights and sound in a hair salon. 4 hours in a salon would probably lead me to be bed bound for around a day.
Tuesday – the last medical appointment was for my filling. I did it without diazepam the first appointment in ages where I have managed that. My dentist and I have now got a process that works and reduces my anxiety. I had to ask him just to not tell me any detail about the procedure. I only need to know that I require a filling not what he will be doing. It worked brilliantly as he didnt tell me on the 4th of November what the process would be and yesterday as he did it he kept quiet . It worked like a charm. I was just left with TMJ pain in the afternoon and evening, which triggered a migraine. I spent a lot of the dog training session last night losing the vision in my right eye and the feeling that my scalp was shrinking.
Today ( Wednesday ) I have woken up with the remains of a migraine, waves of nausea and just generally feeling washed out and knackered. I will push myself later to get something on the Christmas present to do list made or completed but for the minute I am drinking bucket loads of coffee in the hope it will make me feel more human again.
Like all holidays, that sabbatical seemed to go alarmingly fast! It seems like 5 minutes ago I wrote and told you I was taking a break, for the first time in forever. Loads has happened
since I wrote my last blog post back on 24th October. Despite the fact it has only been 3 weeks. Crazy how life goes.
Hubby and I had a good birthday and were spoilt by our friends and family. Due to being unable to get the time off work I spent the afternoon of my birthday with Heather. She brought a load of second hand clothes with her from a local group, where you offer things to the community and in return if you take an item you donate fresh food to the families being helped by the group who are receiving food bank parcels. The group is currently helping around 20 families who through no fault of their own are struggling. In all my life I don’t think I have ever known so many people who are struggling financially or so many people relying on food banks. When I was growing up I had never even heard of a food bank. Yet for some families these days it is the only way they can feed themselves once the rent and bills have been paid. So whilst I had fun with the clothes at the back of my mind were these poor families.
We had a good laugh trying on the clothes, my brain is taking a long time to catch up with the fact that I have lost 4 and a half stone (63lbs) I see smaller size clothes and think well that will never fit and then almost die of shock when I can get it on. Some of the clothes were hideous or just too revealing. But I am so grateful for the stuff I have been able to take from it to tide me over until I get to my target weight. At the moment its jumpers and stuff I can layer up that I need due to my poor temperature regulation and menopausal hot flushes. I am either freezing cold or throwing every item off because I am suddenly dripping with sweat.
Heather gifted me a wonderful birthday present, which I haven’t stopped using since I unwrapped it. It is a hot water bottle that is long and skinny. It must be over a metre long and about 10-15cm wide. It can take up to two litres of hot water. What I love about it is that I can wrap it around myself. So I can apply heat to my lower back and hips in one go. Where as before this could have only been achieved using three.
Mr Myasthenia Kid bought me a wool pressing mat to help me with my sewing and embroidery. It means I don’t have to wait for him to be home to get the ironing board out. Any surface can now be turned into an ironing board and it produces the most amazing results. I also got a beginners book on crochet. I have wanted to teach myself for ages and wasn’t expecting anything crochet related until Christmas so it made a lovely surprise.
I managed to get lots of things made which reduced the panic I had been feeling. I still have a mountain of stuff to do but it is a much more manageable mountain. I was feeling before like I was being suffocated under the list of jobs that needed done which is why I took time away from the blog. I just needed to get rid of the jobs that I could and focus on the stuff that I needed to get done. Some stuff I can post here but the rest I can’t due to them being people’s Christmas presents.
I’m still making my way through lots of stuff but I no longer have to keep pushing myself beyond my limits. I am no longer surviving on painkillers and very little sleep.
We also managed a trip out for a few hours for a walk, somewhere I could take my scooter. Dembe adored going to Haldon Forest. He was spinning around like a kid with excitement.
It was so lovely to get out and blow some cobwebs away. I said to Jay in the car on the way home “if you told me at the start of the year that I would be able to feel this happy again ever, I wouldn’t have believed you”. Even when we had Dembe in the beginning I just felt like I was going through the motions. Now I feel like I am living again and want to be present.
I have taught myself to crochet ( how well I have no clue) I started on the 2nd November ( badly) and found some videos to help me. My hands have been fine up until today, the base of my thumbs are killing me this morning and my fingers are really stiff. I have managed to make myself a snood / infinity scarf from a yarn tea cake ( huge ball of variegated yarn ) which I finished last night and I am also working on a Christmas blanket.
The pattern on my snood is almost like one called vintage shells. So it is raised up and not flat, I made a lot of mistakes, mainly counting – thanks dyscalculia but I am incredibly proud as considering I hadn’t even picked up a crochet hook until 2nd November 2019 , I think I have done well.
I’ve had two appointments, the eye hospital where they were incredibly pleased with how well my eyes are doing with these new drops. I still have the odd evening where I forget to apply them because I have fallen asleep but on the whole I do remember. I had the dentist last week and as I thought I need a filling so that will be happening on Tuesday next week. I am trying to keep that at the back of my mind. Tomorrow I have an ultrasound on my neck to check out the lump only I seem to be able to feel. It is non stop fun here.
We are back at dog training again. Dembe loves it there and cries with excitement as he knows where he is going on a Tuesday evening. We have also started dog agility training for fun, our first lesson was on Sunday. Dembe did incredibly well, his obedience training has really paid off as he was by miles one of the best behaved there, even though he was sick – probably because he had been swimming in the sea before we went. Yes my baby had swam in the sea!
This Saturday is Dembe’s first birthday! Can you believe it? It is crazy as we still see him as our tiny pup. He won’t be fully grown for another 12 months but I think he will always be our dinky dot.
And yes I am knackered and in pain from all this going out. I have to try to pace myself and get some down time in between excursions but unfortunately that isn’t always possible. I am learning to be kinder to myself and not see rest days as a failure or lack of achievement.
I have decided to give myself a sabbatical, it is quite rare these days that I take a break from blogging but I feel like I am juggling so many balls in the air at the moment that I need to just step back for a bit and allow myself to just be. So the next blog post after today will be posted on 14th November 2019.
I have a crazy couple of weeks happening and I seriously don’t know when I will find the time to blog and do it to a standard that I am happy with. I will still be doing The Dembe Diaries during this time, which you can find here, that is published each Monday morning and lets you know what Dembe has been up to the previous week from his training to his general antics. As that is just a straight forward copy of the paper diary I keep it requires no brain power!
Next week it is my birthday, followed by hubbys. We then on the following week have a myriad of medical appointments, I have the dentist and my check up at the eye hospital and then a trip down to see our parents. I know after those three days I will be wiped out and I don’t want the pressure of worrying about producing a blog post.
I also have a mountain of Christmas presents to make and I am getting stressed / panicky about not being able to achieve it all. I know in reality I will and if I dont we can buy gifts. But I had my heart set on making everything. So by taking away the pressure to produce a blog post for the 31st October and 7th November just gives me a bit of breathing space.
I am also trying to practice what I preach and ensure that I start putting myself first for a change. I tend to put my own physical and emotional needs well down the list of priorities and get so surprised when I am burnt out or suffering from migraines / a flare up of PoTs symptoms. Sometimes you just need to cut down on what you are doing or how thinly you are spreading yourself around. I don’t mind all the sewing I have to do as I enjoy that, I just can’t be the one picking up the pieces for people who don’t give me a second thought when I am no longer present. I have cleared away the negative and have decided that moving forward the moment I feel taken advantage of I will say. Rather than bottling it up and exploding at a later date.
Things have to change so from now and especially from 2020 I have decided
Far too many times I see people especially women filled with the belief that they aren’t good enough because of the way they are made to feel by others. If anyone makes you feel like that then they aren’t good enough for you.
On a happier note Dembe swam for the first time last week and Mr Myasthenia Kid managed to capture it on his phone.
I was so proud of our baby. He has always loved water but he has never been brave enough to swim until last week. I wish I could have seen it in person, c’est la vie!
Anyway that’s enough of me rambling, I shall be back in a fortnight. Hopefully with more energy and lots to tell you. Until then take care of yourselves!