Thursday 28 January 2016

Entertaining and the aftermath

On Wednesday 20th January I held a Body Shop at Home Party for a few friends. It was a way of getting all the girls together and have a catch up whilst pouring over beauty products. It was held for entirely selfish reasons I needed some company badly due to my hatred of the month of January. 

Yes I know I have said in the past I hate October with a passion but January also is a horrible month for me. December is usually quite social with family and friends visiting during the month but once Christmas and the New Year has passed the only person I will see for weeks on end is hubby. And although this is utterly delightful, talking to the same person in isolation does nothing for my emotional well-being. 

January is the month when I first became sick, well sicker to the point that I could not sit up and take notice. This was the month back in 2007 when I developed ptosis and was wrongly diagnosed with Bell's Palsy, it wasn't until August that year that I got the tentative diagnosis of Myasthenia Gravis, which was then removed in 2009/10. This month is an anniversary month and always makes me feel quite low, next year it will hit double figures and I have no idea how I will wrap my head around it.

January is also the month my husband had his horrific car crash. He was hit by a drunk driver in a stolen car. Luckily he walked away with injuries that didn't need hospitalisation. However his recovery took months, he had problems with his knees which had been rammed against the steering column and his lower spine, just from the force with which he was catapulted forward. He also had psychological issues with driving, losing his confidence and panicking whenever he saw oncoming headlights. The dogs were in the car at the time of the accident, they were covered in glass where a few of the windows had shattered all over them. Mollie has never got over the crash and shows signs of stress every time we travel along the road where it happened. 

So as you can see January is quite a dramatic month for me, without adding in nearly losing Willow to Pyometra in 2014 and breast cancer in 2015. Her huge operation for her lipoma and cyst removal took place in December but that has already necessitated a couple more trips to the vets as she started to reject her dissolvable stitches ( which are taking an age to dissolve ) and her wounds opened back up.

So to get me out of my navel gazing funk I decided to hold the Body Shop Party and get to meet up with friends who I hadn't seen in a while. There were only a few that could make it due to work commitments and illness. However this didn't dampen the evening and actually made it a whole lot easier as it meant there was space for everyone and that emergency chairs weren't needed. I had already ploughed my way through the catalogue and decided on what I was getting before the evening, so I didn't do a lot of product testing. I mainly exercised my jaw with yapping to everyone who would sit and listen. I know that I can be full on when I haven't had any company for a while. I talk at record speed and it can be hard to keep up with me. I tried very hard to rein it in. All that said it was still a cracking evening.

The party didn't finish until 10:30pm on a normal night I would have already been asleep since around 8pm, yes I know I am just so rock and roll! So by the time I locked the front door and made my way up to bed I was desperate for sleep. My back had been playing up all week and all day I had been unable to bend without shooting pains down my leg, so by the time I got to bed I was in agony. Which I had been able to successfully hide all evening. Needless to say I went straight to sleep, normally after an evening like that I would be awake for hours, not last night. I didn't wake up until 10:20am so that alone speaks volumes regarding how tired I was, when a normal night is 4-6 hours.

Thursday 21st January:

This morning I feel like I downed 20 pints, my balance is off, my eyes are dry, I am shaking, have a splitting headache and I am in a lot of pain. All I drank last night was diet ginger beer, my favourite soft drink, hardly the reason why I feel hung over today. This is the side of things very few people see. I am beyond exhausted, despite not doing anything other than sitting on the sofa talking. It seems crazy that my body needs to punish me so severely for a few hours of socialising. I love seeing people but I hate the recovery phase after. No amount of pain medication will get on top of the pain and due to sleeping in I missed my normal medication taking time of 8am so I was over two hours late taking them. The pain was what had woken me up.

There isn't part of my body that doesn't hurt, it's a day I would describe as feeling trampled by a horse. I know I enjoyed last night but I am so exhausted I don't remember much of it. Like a drunks amnesia the memories escape me at the moment. The evening was needed but I am beginning to wonder that the price may have been on the high side.

Friday 22nd January: 

Yesterday despite my best efforts was a write off. I managed the sum total of three hours outside of my bed. The pain was too much the fatigue all-consuming and I just couldn't function. My kidneys were also hurting from not consuming my normal amount of fluids (6-8 litres) it took all day of drinking copious amounts of fluid to get them to stop screaming at me. I got worse as the day went on, every time I attempted to get out of bed because boredom had set in (I really am the worst patient ever) my legs gave way. I ended up walking like a newborn foal. I get bored very easily, I was so tired that watching TV wasn't an option I wouldn't have been able to follow what was going on for more than a few minutes, reading, which I am doing a lot of recently wasn't an option either as my eyes simply refused to focus all day. Even with my reading glasses on all I could make out were blurred words on the page. When I am tired to this point my eyesight just goes and all objects, faces etc are a blur. It is really incapacitating. EDS affects the eyes because it is muscles that are used to contract the lense and focus the sight. Tiredness means the muscles just don't respond. 

The term tiredness, fatigue exhaustion don't really cover it. For those of you who aren't ill, you can't probably imagine what I am talking about. I am talking about a level of fatigue where your body just refuses to function. Walking to the toilet becomes an endurance sport, sitting up, holding a conversation is much the same. All you can do is lie down and sleep if you are lucky.

Today I am feeling much better, I am still shockingly tired and wracked with pain but I can function. I will have to continue to take it relatively easy for a few days and I won't resume my normal levels of shittiness until next week. I can cope with that though as one evening with friends has been the tonic I needed. My spirits are lifted and after all there are only a few days left of this shitty month.

I am also being treated to a visit from a close friend this afternoon. Whilst the timing is a bit silly and will knock back my recovery from Wednesday night, I want to be like a "normal" person. To enjoy life and not limp from one social engagement to the next. Sometimes mental health has to take precedence over physical health. Without good mental health my body will not recover, I will not be able to push through or cope with the levels of pain I endure. I am a firm believer that the body needs to be treated as a whole, mental and physical health should be seen as one. Now I am feeling better mentally after the blip late last year my overall health feels much more in control.

A big thank you needs to go to those of my friends who attended the gathering on Wednesday night. To me it was so much more than just a get together, it was a life line.

Thursday 21 January 2016

I'm not doing people today

***Bad language warning***

Oh the irony!

I will be completely honest I can be a cranky bitch at times, today is one of them. I can't be bothered with people, I just want to retreat into my shell. I have zero tolerance for what I call fuckwittery, these are mainly actions fulfilled by fuckwitts. An example of fuckwittery would be asking a question where the answer is obvious (to me), attention seeking on social media through dramatic statuses / messages or just generally the person breathing the same air as me can set me off. Of course this all flies in the face of the image the chronically ill have to portray, the happy smiley brave person who battles on regardless. Devoid of any other human emotion than perfect happiness.

You won't be surprised that these "moods" tend to come on when I am in the midst of a pain flare. You would be right if you guessed that I am in the middle of one now. I am deeply annoyed that the neuropathic pain that I have suffered with on and off for about 15 years has come back. B12 injections back in 2014 has ended this constant pain. I am up to date with my B12 medication so can not understand why this is back other than I have possibly irritated a nerve in my back. This nerve obviously runs directly into my brain for me to be this boiling cauldron of rage currently. 

On days like these I can't be trusted to engage on social media, I can't do small talk or act as your personal life coach, it is too emotionally draining. If you ask me a question you are likely going to get an answer you do not want to hear and that I probably, well I am 90-99% sure I don't mean. I do try to warn people when I have entered into one of these rage filled moods. The problem is they just don't believe me or seem to get it and keep pushing it until I either step away or tell them to stop being a fuckwitt.

Weirdly I can play nice when the red mist descends with family members and close friends, up to a point. My gp has rung when I am hell-bent on world destruction and you would have thought butter wouldn't melt in my mouth. As soon as the call ended I was back to my dastardly plans. I can act as if all is well for several minutes before the mask begins to slip. When I am in intense pain I am just not a nice person to be around.

My husband knows the best form of defence in these situations is retreat. He knew this morning when I barely uttered three words to him, today would not be a good day. Little Miss Sunshine would not be making an appearance anytime soon. He was wise to stop himself asking me if I had taken all my pain meds as anything that was to hand may have been thrown at him. He wisely decided to take himself out for the morning as he was day off from work. Who can blame him, even I don't want to be around me right now.

In the end I admitted defeat and went to bed. I had become so exhausted by the pain and with the constant biting my tongue so as to not rip any ones head off. Social media also had to be avoided for fear of telling a fuckwitt or someone displaying fuckwittery being told exactly what I thought. The filter that I try to use at all times had been removed which meant that anyone was fair game. It was not a day for ambiguous attention seeking statuses or dramatic messages. I was too far gone in rage and pain to act like a well-adjusted adult.

Twenty four hours have passed since the rage set in, I am back to calm almost zen like Rach, with my fuckwittery tolerance back into the normal range. The pain has lessened so peace has been restored. If you have never known neuropathic pain or a pain that wakes you from your sleep that will not go away, distracts your every thought you will probably never understand the rage that can come with chronic pain. I hope you never have to experience that kind of pain. I can understand why people snap and just give up if they have pain like that day in day out. 

I am lucky pain on that level is not constant, it just flares up from time to time. I think the change in temperatures had a lot to do with it as if my legs get cold (I have suffered with this weird phenomenon since childhood) I end up with them going white and I struggle to warm them up. Warming them up usually consists of going to bed with my electric blanket on maximum for several hours. Yesterday I kept fighting going to bed, I was not completely rational. So the pain the cold had caused just grumbled on increasing by the hour.

When the pain is that intense I can become illogical and reactive to anything and anyone. Even inanimate objects can become the victim of my rage. There is no rhyme or reason as to what will set me off. People can be a major source of annoyance hence the title of the post. 

I am a people person. I like helping people and being with people but it's on my own terms. I do control who I allow into my life quite closely. I have been involved with far too many users and abusers in the past so I am intensely careful now. I have always been ok with my own company, I have had to be as I have never made friends easily. Being solitary has always been fine with me, maybe a bit too much as I can easily withdraw from social gatherings. I can do small talk etc but I am crap at cultivating friendships as the other people feel like they are always being held at arm's length. It is funny that my husband is the same. He is quite solitary, although he has friends he would rather be home with me, than out with them.

So I can do people today, just it will be on my own terms and massive amounts of fuckwittery will not be tolerated.

It seems spell check doesn't like the use of fuckwitt or fuckwittery. It is funny as my phones predictive text knows exactly what I am going to say!

Thursday 14 January 2016

9 years

Monday marked the 9th Anniversary of me falling sick, it was also the day the legend that is / was David Bowie died. 

I marked my anniversary with this post on my own Facebook profile and on my The Myasthenia Kid Facebook page which links with my blog. (You can also find me on Instagram - RachelJillMorris).

"Today is the 9 year anniversary of me falling ill. To say I feel sad is an understatement. To say I have learnt to live with the changes that chronic illness has brought to my life would be a lie. However there have been good things that have come from this experience, I have greater empathy for others, I have a closer relationship with my husband and my family, I have better friends. There is good and bad in every situation it takes time to appreciate the good stuff."

When I first fell sick, I found myself in a very dark place. As the months went by I found more and more of the life that I knew was slowly being stripped away from me. Nothing can prepare you for losing the life you loved and the things you took for granted. I am so thankful for the people who stood by me whilst I wallowed in self-pity. I must have become incredibly boring whilst I talked non stop about every new symptom and how yucky I was feeling.

The hardest thing to give up was walking my dogs, I was the one that walked the mutts miles, come rain or shine. The sense of freedom I got from those daily walks at the time was taken for granted. There are places that I loved to walk that I will never see again because they are an hour away by foot from the nearest car park. I wish I had taken photographs as over time I am losing the memories of them. The dog walking was given up which much reluctance by me, due to fainting / falling several times on walks. The common can be very isolated in places and without a decent mobile phone signal, if I had injured myself I could have spent hours waiting for help. 

I've spent years being bounced between doctors and seen a side to medicine no one should see. After my first appointment with my new consultant in December last year I found out that I had been over the years diagnosed with CFS / M.E, Fibromyalgia and for a while Myasthenia Gravis, from which the blog takes its name. I have also been diagnosed with somatiform disorder, Bell's Palsy, a movement disorder and many other things which have fallen by the wayside. If I had not fought so hard when I felt I had nothing left to give, when I felt at times death would be better, I would have never got to the diagnosis of PoTs (postural orthostatic tachycardia syndrome) and EDS (Ehlers Danlos Syndrome). 

During the year that I insisted that I had both EDS and PoTS to my old gp, I was told PoTs doesn't exist and EDS was too rare, if I had EDS I would have been diagnosed by now. I proved my hypermobility over and over again, showing the doctors the Beighton scale and performing my party tricks. Eventually I paid privately for a consultation with a Rheumatologist who confirmed the diagnosis within five minutes of meeting me. I thought the medical battles would be over, they weren't I was just deluged with a whole bunch of different ones.

There are so many awful experiences I could recount, that I could write a book. Some have scared me psychologically and cause me to have anxiety attacks when faced with meeting new doctors or having to stay in hospital. I find it very hard to trust people, especially anyone in the medical profession. I have been badly hurt by those I thought were my friends and I would have done anything for. 

I still carry a lot of anger but it's no longer rage, where I would do anything to get my revenge on the people that have hurt me. There are still situations where the anger bubbles to the surface and it takes me by surprise. Over the years I have been trying to let things go, I can't change what happened to me in the past and I can only look to the future. It has taken years for me to get to that position, for quite a few years my anger consumed me and coloured my outlook on life. All it did was make me very unhappy. Over time the anger lost its strength, I had become so far removed from the situation and the people who hurt me, that the only person still caught up in those events was me. I don't know when I made the decision to just let it all go, I don't think I did it just happened.

If you had told me 9 years ago that there would be positives that would come out of this situation I would have probably slapped your face. Yet as much as there have been bad things happen there has also been a great deal of good. My understanding of living with a chronic condition has deepened purely from my own experience and this has given me a whole new level of empathy. I have always been quite an empathetic person but now I can apply it to everyone I come into contact with. I know that everyone be they sick or not has stuff going on in their lives which is hard / stressful / emotional and understand that their initial reactions may not be their true feelings. In a nutshell I cut people a little more slack than I used to.

I always thought I had a good relationship with my sister. We may have fought like cat and dog growing up but I thought we got on overall. For a while I think we lost each other or rather lost our understanding of each other as our lives were so very different. She had become very sick at a young age, I was "healthy" and had moved out of home. We didn't seem to have a lot in common anymore. When I became sick she was one of the first people I spoke to at great length about things. I knew she understood what I was talking about because she had already been through the emotions I had and she knew eventually I would reach a level of acceptance. Our lives are very different again now, she is married and a mother to two beautiful boys, I am child free by choice and keeping in contact can be difficult due to the demands of motherhood. We always make the effort though, through text messages or phone calls. Of course we still argue, it would be weird if we didn't.

I lost a lot of friends when I got sick, I could go weeks and sometimes months without seeing anyone. I have also lost friends since becoming ill, one got bored with me never getting better and didn't understand that there was no getting better. Another was just a master manipulator, who unfortunately I let get inside my head. Eventually after 12 months of pleading by my family and my closest friend, I decided to call time on the friendship. It didn't go down well and I was sent a stream of abusive text messages. However I had come to the point where I would rather be alone than have this person in my house. When you feel that strongly about a person, even when it means social isolation you have to get the hell out of there. That was another lesson I learnt and a good one, that friendships have to be equal, just because someone comes to visit you, doesn't mean you don't have a voice or that you are their subordinate. I spent years being made to feel grateful that this person spent time with me, never again will I let that happen.

I have made new friends during this time and I have to say better friends. They may not understand my illness, there are times I swear that I don't but they are understanding when I need to cancel at the last-minute or have to show them the door because I am exhausted. They know to keep their visits to 2 hours maximum, even if I look like I am ok and I am yapping away. They know that more than that will exhaust me. Some friends stay longer and that is ok because when they visit I ensure my week after they've been is completely free, to allow for recovery time.

Its taken me a while to be able to break down the walls that I have built around myself for protection. When you have been hurt so badly by others you tend to cut yourself off. I have taken huge leaps of faith and allowed people into my life. Occasionally I will catch myself putting my defences up, it's a work in progress. My friends now actually want to spend time with me because they enjoy my company. I am not being used for their gain as  people I thought were friends in the past have. I hate to admit I have been sucked in by those kinds of people but I know so many people who are chronically sick and they've all said it was the way they were treated by people they thought were their friends that hurt them the most.

Another positive to come from being chronically sick is I get to spend all day every day with my babies. Dogs lives are so short, I feel it's an honour to be with them everyday. I may not be able to walk them anymore but I get enormous comfort from them. They know when I am sick and are ultra protective of me. They love me unconditionally, even when I am a grouch because I feel like death warmed up. They may not be able to run and get me hot water bottles and the like but when I am home alone they give me a sense of security. I can't explain how much I love them.

I also get to spend more time with my husband, we are no longer ships that pass in the night due to our work schedules. I get to spend quality time with him. Our relationship has deepened and grown stronger since I got sick. I have seen a whole new side of him that I never knew existed. Even colleagues have told me he is much more compassionate and thoughtful since I became ill. I knew it was there under the surface but it has really come to the fore. He has grown as a person to have become so much more than I could have expected him to be. I am so proud of him. Many men (and research studies back this up) would have walked away when being confronted with their wife getting sick and no longer being able to work. Jay stepped up and has shown his love for me in the face of some pretty awful circumstances. He made the choice to stay, be my protector and my caregiver. 

Just when I was in the depths of despair in 2008 I began my blog, when I started it I thought I was dying. I am not being melodramatic, I knew that there was something seriously wrong with me and none of the doctors I saw were taking me seriously. It was started as a record of the treatment I was receiving at the hands of the medical profession. It was an outlet and a safe place for me to vent my feelings, to say the things I couldn't in real life. I found blogging therapeutic, I found my voice again. I may not have hundreds of thousands of views or have gone viral. I am actually quite thankful for that at times. I have a loyal band of readers every week and that's enough.

There have been times that I have stepped away from blogging due to feeling that I didn't have anything worthwhile to say, this was always caused by depression. A demon I have been fighting for many years. There were also times that I have just been too sick. At the moment blogging is such a huge part of my life that I can't imagine not doing it. It has become a large part our mine and my husband's life, so much so every week he asks me if I have a piece ready for Thursday. A question I never thought I would hear him ask and even though he is not a great reader he has surprised me several times by telling me he loves the piece I have just published.

These are just a few of the examples of the good things that have happened since I became chronically ill. It has taken me 9 years to appreciate the good that has come from an awful situation. What happened to me between 2007-2009 would have sent many people into a nervous breakdown, as an individual and a couple we felt we were being attacked on all sides. There seemed no light at the end of the tunnel. Slowly we both became accustomed to the ways our lives had changed. When chronic illness strikes it would be foolish to believe it only affects the person who has become sick. It affects everyone around them, it changes relationships and friendships. It's only now I realise that, nine years down the line. Thanks for hanging on in there.

Thursday 7 January 2016

2015 a year in pictures

2016 has kicked off much the same as 2015 did, badly. My health hasn't been great, I have managed to quite badly sprain my wrist which is hampering typing and all manner of other things. Hubby has come down with the norovirus, which I have escaped so far, which is good as we only have one bathroom and I can't run as fast as him!

So my first blog post of 2015, I thought I would compose a picture post. I hope you enjoy it.

January 2015:

In January 2015 Willow needed quite a large operation to remove a tumour from her breast tissue. We were lucky that it was caught very early, probably because she adores her tummy being rubbed. Although once the tumour had been tested we found out the mass was 50% cancer, as dogs cancers are mixed it was part aggressive and part slow-growing, the other half of the mass was benign. There is a 50% chance of the tumour coming back so she is checked regularly by us so we can identify lumps quickly.

I chose this photo (taken from the television) as on the day of Willows surgery a Television crew were at the practice interviewing the vet who carried out Willows operation. If you check out the whiteboard in the background you can see the Willow's name is visible and she was first down for surgery that day. Our little girl was famous for a few seconds that night. That day was the longest of our lives, we had, had to prepare ourselves for the possibility Willow wouldn't be coming home. Breast cancer in dogs is very aggressive and spreads to the lungs very quickly. Before her surgery took place she had to have an x-ray to check her lungs were clear. If it had spread to her lungs the kindest thing to do would have been to let her go. As you can imagine Jay and I were a mess, until she was back home with us. It actually feels like it was much longer than a year ago.

February 2015:

This picture is taken from my blog post My Urethra moment, when I learnt how to self catheterise. I was so proud I managed to do this and that it would mean I should be able to avoid acute urinary retention happening again. I wanted to shout it from the roof tops!

I posted this quite graphic post as I wanted to take the mystery out of catheters. Until I had to learn how to perform this myself I had no idea what it was all about and what the catheters would be like. Until then I had only had my catheters fitted by District Nurses, they were huge cumbersome things that I really didn't get one with.

June 2015:

This picture was taken from my blog post Falling, it was the worst injury I suffered in 2015. I had already fainted after using the toilet a few days before this accident had happened and had been very lucky I hadn't seriously hurt myself. My foot injury occurred due to a freak accident, slipping on the bathroom floor whilst semi conscious. The noise of me falling was so loud that I actually woke up my next door neighbours (we live in a small row of terraced housed with paper-thin walls). I didn't just hurt my foot, after this fall I woke up at 4am with every part of my body screaming at me. Over the coming days I was covered in bruises in odd places. June was not a good month for staying vertical.

July 2015:

As I am so crap at taking photo's on a regular basis (up until last month when I upgraded my mobile phone), some months, such as this one will have several photos not just one due to several months having none.

At the end of June Hubby and I held our annual BBQ, unfortunately as usual the party really took it out of me, so much so that Ptosis came back with a bang. I won't lie it's a bloody nightmare when this happens as I get double vision in the eye I can see out of and my forehead feels like it's being torn apart. As you can see from the photo my left eyebrow is desperately attempting to keep the left eye open by arching ridiculously high. At some point the muscles will no longer be able to cope and then I lose my sight completely. All I can do then is lie down. I have had more bad Ptosis this year (I have it every day but usually it is barely noticeable) than I have in quite a few. It's distressing as I feel physically deformed when it happens.

July was also the month that I found out that I was suffering from reactive hypoglycemia. You can find out all the details of how I managed to discover this in my post Women Glow.

September 2015:

September 25th was our Crystal Wedding Anniversary. Here is a picture of my beautiful bouquet of flowers hubby bought me and a small selection of our cards.

October 2015:

This is my favourite picture I have taken of Frankie all year. He was sat sharing the sofa with me as he usually does in the mornings, whilst the girls stay upstairs and sleep. He is my constant companion, looking after me when I am sick. Hence his nickname Nurse Frankie.

November 2015:

November was the month of our belated fancy dress party. The full blog post containing pictures of everyone's outfits can be found here. It was a brilliant night and hangovers were suffered by all.

December 2015:

It was this month that I upgraded my mobile to a proper smart phone and I have been in love with it ever since. My old phone was very complicated to use and didn't produce great photos. Some of these pictures are dodgy because my eyes can get very blurry, when taking the photo it can look crystal clear, its only later when my eyes are behaving themselves I can see what a mess the photograph is.

Due to Willow having a serious operation this month (further details in my blog post Willow) we had to forgo putting up our large Christmas tree and borrowed this smaller corner tree from my parents. We needed something that would be out -of -the- way and would remove the possibility of Willow catching her stitches on the branches. We fell in love with the tree as hubby didn't have to rearrange the lounge furniture to accommodate it. My parents have kindly given it to us, so it will now be our tree for many years to come.

I have a bit of a problem with Christmas trees, I tend to change them on a pretty regular basis. Now with mums old corner tree added to my collection I have three sat in my loft. I think I have inherited my thing about Christmas trees from my mum, as she was always changing trees and still does. Her latest one is absolutely fabulous. Had I realised I would be doing a picture post I would have taken a photo to publish. My mum's tree's are always impeccably decorated and like her there is absolutely no tinsel in our house.

Willow recovered very quickly after her operation and once her stitches were out was pretty much back to normal. Above is a photo of her waiting for her dad to come home, desperate for her evening walk.

This is Mollie snuggled up with me on the sofa. Throughout December I found it was Mollie who got up with me through the night, my sleeping has been pretty terrible again. Frankie decided to stay upstairs with his dad, taking over from Mollie once Jay had gone to work.

This is me Christmas morning waiting for Jay to get up so that we can open our presents together. I decided now that I can take selfies I would take more photographs of myself. I am what I call photophobic, my family's photogenic genes have skipped me completely plus I have quite a distorted body image. The selfies are a kind of therapy to stop me being so hyper critical of my appearance. Anyone who is friends with me on social media knows up until August this year there had been very few photo's of me. So it's been quite a shock for them to finally see photographs of me. I still can't stand myself in photo's but the more I take and post the less sensitive of my image I am becoming.

This is me glammed up boxing day (what we call the 26th December in the UK). I love makeup but I very rarely have the energy to apply it. Hubby bought me some lovely new face powder and makeup brushes, so I am going to try to make more of an effort this year. 

On Boxing day we had a friend over for a few hours, the photograph below is me looking rank due to my chronic conditions and exhaustion. Quite a difference in 24 hours. By the time I took this photograph it was late morning / early afternoon, I had actually improved in appearance by this point. Christmas completely wore me out.

What people who don't see me all the time don't realise is that most days I look like this, pale and sick. I even look healthier in the picture from July where I have bad ptosis.

I won't just be posting selfies when I am all glammed up but also when I look and feel my absolute worst. One glam photo doesn't mean I am magically better or that I am pretending to be sick the rest of the time. I am hoping that this will raise awareness of invisible illness, although I would argue it isn't that invisible and help me overcome my photophobia.

I hope you all had a wonderful time over the festive period (or as much as you could) and I wish all my readers a happy new year.