Too exhausted to cope

Yesterday was an emotional day, it would have been grandads birthday. He passed away 9 months ago so still grieving but his wife of 70 years, my grandmother, passed away last week. I hope they are together now.

I went to see the fatigue specialist physio and I got emotional telling her I now have weakness in arm muscles aswell as my legs and I’m so scared of becoming bed bound as I’m feeling like what’s the point…..It was the first time I said it out load and it was infront of my father. I don’t like being so open infront of my parents. I only have to hold something light for a few seconds & arm muscles hurt.

Today I have no energy to get out of bed, I’m exhausted by yesterdays trip to the hospital in London. This #chronicfatigue is draining me more then my pain which thankfully is mild at the moment. I don’t want to get up or wash or dress or eat. I’ve had so many pyjama days past few weeks which is just not me! Dealing with the grief of the passing of my gran onto of being ill and exhausted was just too much to handle?

Does anyone have any tips to share especially if you’re also in employment?

I am my own muse

Frida Kahlo

Artist – Feminist – Communist – Disabled!

Frida Kahlo

So why am I talking to you about Mexican artist First Kahlo? Yes you know, the one who paints self portraits with thorns around her neck and spine made of metal. The one with the unibrow and moustache? I’d say one of the most famous female artists who pushed the boundaries. Well I studied Art and I thought I knew enough about her until I recently went to see an amazing exhibition at The V&A gallery in London called Frida Kahlo: Making Her Self. It was an exhibition of her personal artifacts and clothing rather then her paintings and I walked out feeling very inspired.

She lived a lifetime of pain both mentally and physically. It is believed her disability stemmed from being born with spina bifida, a congenital condition that could have affected both spinal and leg development. She also developed childhood Polio at age six leaving her with a “peg leg” which she had to have amputated in 1953, a year before her death. At eighteen, a bus accident left her with serious injuries, lifelong pain and medical issues. It was a miracle she survived. I knew from my art books that she had been in a terrible accident when she was a teenager but I never realised about her childhood illnesses and the extent of her disabilities. She seem determined to overcome these challenges and now, so am I! Frida Kahlo is my muse, I am my muse!

We all know how difficult it is to stay positive, to see a bright future. All I could see in my future was being in a wheelchair and on my own and the depression followed. How did she cope? Maybe her paintings helped her release that pain. I still have those negative thinking days, don’t get me wrong, but I try to see my disabilities as an opportunity to help others and to raise awareness. I’m not saying she’s my hero because she’s in so much pain like me I don’t actually know what it is, her love for her country, her strong political beliefs, her courage or the way she expresses the suffering in her art.

Frida died in 1954 and in 2004 it was discovered that her husband Diego Rivera had two rooms in their home filled with her personal possessions, documents, photos, her diaries, drawings, books, nail varnish, lipstick, outfits, hospital gowns, painkiller boxes, orthopedic corsets, you name it. He wanted to preserve their love. Thanks to this love, we were able to see this hidden side to her at this amazing exhibition. So why the inspiration? Well apart from the fact she was lucky to be alive after the horrific bus accident, she had to learn to deal with her disabilities from a young age. She hid her limp leg layering up with thick socks and boots. It’s obvious now all the beautiful traditional Mexican clothing and jewellery she wore was actually to hide her broken body. I think it’s interesting how she would dress to hide her scars and disabilities and yet in her paintings she showed everything. She showed all her pain and in quite a graphic way. When she had her leg amputated she decorated her orthotic foot which I saw at the V&A exhibition and it was amazing. A red boot decorated by Frida with Chinese embroidery thread and little birds. The exhibition also shows the corsets she decorated which covered her broken spine, you can see in the photo below how she painted the corset.

Frida Kahlo’s orthopaedic boot. 

She did a lot of the painting whilst in bed. Her bed I’ve been fixed with a large mirror above her so she could see what she was painting evil on a canvas or on corsets. Being bedridden for so long after her accident and her childhood illnesses she kept busy drawing and painting this way. I guess when you see nothing around you but your room and reflection of your broken body what else can you paint?

Frida Kahlo painting her corsets

She’s also good example of what we are all now trying to teach others, that ‘Not all disabilities are visible’ and that looks are deceiving. She looks healthy, she looks fine, isn’t that what they say about us? ‘You don’t look ill’ or ‘You don’t look disabled’. I read she hid her injuries with this type of clothing when she met Diego but then why did she hide herself after? Why did she paint herself so graphically? I wish I could find her strength. I don’t even have the mental strength to share my pain by writing this blog. It’s not even due to the physical pain or mental strain but it’s the chronic fatigue, the brain fog just drains my creativity as well as my energy. I wish I could draw or paint what I’m feeling inside. I’m an artist but I draw portraits so not things for imagination. Maybe that should be my goal for this year? See Frida Kahlo is my muse. She’s making me want to try new things. I want to come out of my comfort zone and let go. If Jackson Pollock can express himself splashing paint on an enormous canvas why should I be afraid if what I draw can’t be understood in the way I intend? Who cares? Art is all about being free expressing yourself, what you feel inside.

So what do I show on the outside compared to how I feel on the inside? Several people have said they admire me for just getting on with life. Working like I always have done. Not using my disabilities as an excuse to get out of doing a job because I don’t want to do it. I apparently look well, it’s not what I see when I look in the mirror, it’s definitely not what I feel inside. I’m being strong but I’m not as strong as I look, I’ve just done a good job of pushing those feeling so deep down into the darkness. I’ve convinced myself that my goal is to help others. Why? Because it makes me feel good? It makes me feel like there is a point to all this crap that’s been thrown at me? I do feel good helping others but I can’t use it as a distraction to forget what’s happening to me. I am mentally stronger then I have ever been but I’m still always thinking at the back of my mind ‘What is going to be fired at me next?’

The Broken Column, 1944 by Frida Kahlo

So who inspires you?

About the exhibition

Follow your dreams

It’s never too late, Ankylosing Spondylitis was the end for me then Fibromyalgia and Osteoarthritis too and that was it but now I’m seeing things differently. There is no deadline for following your dreams. Not age, not sex and definitely not our disability.

I was talking to a friend the other day and thinking back to this past year. Lots has happened, good and bad but I am in charge not my disabilities. I have lots to share but unfortunately have not had much time recently to write.

2019 will be another challenge I’m sure for all of us…….. but let’s take control!

Don’t let anyone ware you down

Image by Avogado6

Our lives are draining enough as it is, am I right? The pain, the stress, .the sleepless nights, pressure from friends and family. What about work? Are they supportive? Are they genuinely supporting you? I’m not trying to make you doubt anyone in your life. Remember my blog is an outlet, a release for my suppressed feelings and emotions. People I thought were supporting me at work have stabbed me in the back and I allowed them to ware me down to the point of nearly breaking me mentally, but I am stronger then that. I was drowning in my own tears. I doubted myself, I was so confused. What had I done wrong? Why did I suddenly feel like the one to blame?

I have never felt like I had to prove myself to anyone that I am able to do my job, until I was diagnosed with Ankylosing Spondylitis that is. Nobody put pressure on me and made me feel like I had to, it was just me. For the past four years I have pushed myself and worked harder to prove nothing has changed. Maybe I was trying to prove that more to myself then work, it was hardly a surprise, I was scared. I did not know what the future held for me. I did not know how understanding people around me would be. I only initially told management and two people I work with and I told them I did not want to be treated differently and I would not start saying I could not do things because of my disability. I’m not one of those people who uses these kind of things to my advantage to get out of doing things. I just adjust the way I did things in order to carry on. I thought I was doing ok, I thought everyone understood then when I had a flare I couldn’t do certain things, but they still got done. When my fatigue was bad they said not to worry when I apologized for not being as active. How wrong I was.

So intially as I said I felt supported. It was suggested I log all I do in a day to see if anything at works triggers my pain and fatigue flares but it got to the point that they literally wanted to know my every move. I now felt checked up on and this comment wasn’t received very well they said they didn’t know how to support me, that I don’t want people asking how I am!!!!!! Lies. Anyway I won’t got into details but after this comment I was being treated differently from my department. They were snappy with me and there was a very horrible atmosphere. I was actually shouted at on one occasion infront of a colleague who sat there and said nothing. This is when I decided enough was enough and reported this person for bullying and descrimination due to my disabilities. I never thought I would have to use those words.

Three months later and I still have no idea what this guy’s problem is.

Long story short I broke, I had to go to doctors and get signed off for two weeks. This person is playing with my head, it’s sick, how can I not think he’s desciminating me due to my disabilities when he won’t talk directly to me?

The summer holidays are nearly over. I can already feel my mood is changing.

Have any of you any advice for me? Have any of you been through anything similar. I’d be grateful.

‘Unrest’ an eye opening film

Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.

I don’t normally do reviews but I had to tell you about this film. Even as someone that suffers from Chronic fatigue I can’t imagine or at least I couldn’t imagine, what someone with CFS/ME goes through. Strange? No, because I know what causes my fatigue. My Ankylosing Spondylitis, Fibromyalgia, my anti-tnf injections, b12 deficiency they all cause my chronic fatigue but for me it got worse after a bad spell of bronchitis. I had to fight to be listened to when I told my doctor my fatigue was worse, my body felt weaker. Do you know a virus can stay in your body for up to 10 months? Neither did I! He eventually sent me to see a specialist to see if I had Chronic Fatigue syndrome and confirmed that I don’t.

Anyway, Unrest is a fantastic film that has certainly opened my eyes to CFS/ME. Imagine being perfectly healthy then suddenly feeling so I’ll with no explanation. Imagine being told my doctor’s there is nothing medically wrong with you…..but look at you, you can’t walk without having to sit down frequently, noise makes your head feel like its going to erupt, your muscles feel like they are wasting away and are so weak……but yet they can’t find anything wrong!

Jennifer’s battle is one fought by many around the world. I think her campaign is fantastic and this film really makes you feel the suffering, frustration and determination she has to fight. Please watch Unrest on Netflix and help raise awareness, more people need to understand that this illness is not in peoples head.

Here is more from Jennifer.

Thought of the day!

Another challenge faced – Don’t give up!

As I said in my last post my anxieties have taken over my life. Only now do I realise how much I have missed out on over the years. Now that I have had to fly to Italy to visit my sick grandfather has it sunk in that I have missed years of time with my loved ones.

Four years ago I flew to Italy for the first time in many years, I was terrified to go. It was six months after being diagnosed with my AS so I had no idea how I would cope with sitting for three hours on a plane and certainly no idea if could cope without having a panic attack. I used to love flying, it was the sea that terrified me. I can’t even tell you how it started to be honest. I suddenly felt suffocated on the tube and on planes, even in certain shops.

So as I was saying four years ago I would say decided it was more pushed to go to Italy. My Doctor gave me Amytriptalyne and Diazepam to help me relaxing the flight. So I reached the airport anxious, IBS flares up as always but then I feel ok. I distract myself looking around the duty free shops, then our gate is announced and we make our way.

All the way to the plane I feel the anxiety, the tightness in my chest, my head spinning from the dizziness and I feel so hot. I remember my mum stepping into the plane first then as I follow her on I gasp for air. My chest goes tighter and all I want to do is turn around and to back home. I grab for my mum and she drags me forward to my seat. I managed the flight there with my usual thoughts. It’s too hot, I can’t breath, I can’t get off the plane!

Things were not much better ones I got to Italy. I probably go into that another time. My flight back was a bit better but I had taken meds so out of it I didn’t understand much 😂🤣

So back to the present day. The difference for one is that I’m on antidepressants to help with my pains, thankfully they also help with fatigue and anxiety, secondly I decided I was going, I wasn’t being pushed or nagged to go which only makes more anxious. Pushing someone to do something they are terrified of doing is the worst thing you could ever do. A person suffering from anxiety is already putting enough pressure on themselves, they don’t need others adding to it because they think they know best! If you haven’t experienced it, you don’t have a clue.

So the day before the flight it hit me that I was going to get on a plane and that I was going to see someone I loved dearly in lots of pain. The morning of the flight we (my mum and I) were up at 2:30am and made our way to the airport. I was actually fine, no trouble breathing, no upset tummy. I had to remind my mum a few times not to fuss as fussing makes me worse. I got on the plane and no gasping for air like last time, was feeling very positive.

My plan was to write this post on the flight or watch a movie to stay calm but I did neither, instead I took photos of the beautiful views as we flew over Europe. I was excited, I couldn’t wait to see my relatives and certainly couldn’t wait to see my lovely grandfather. The other achievement whilst I was away was that I got back my safe place. When I was having CBT I was told to think of a place I felt safe either when I was having an anxious episode or meditating. Due to my experience the last time I went to Italy this beautiful little village in the mountains no longer felt safe. Thankfully after this year’s trip that has all changed for the better again. I felt safe on the plane, in the village, travelling around in general.

I had actually started writing this post weeks ago, but obviously once I got to Italy my grandfather’s health took priority. I cherish that week I had with him. Unfortunately he left us a few days after we flew back home to the UK. His suffering was over and yes I have cried but I am remembering the good times and there were so many, that is what is keeping from spiralling into depression and giving up on all I hAve worked so hard for these past few years.

I have just got back from seeing my Occupational therapist and consultant and they are so pleased with what I have achieved these past few months. I hope this story although it has a sad ending has motivated or inspired someone out there not to give up. It’s a long road but we are Warriors, we are survivors, #WeCanDoThis

Brain fog humour

Acupressure Mat – I’m always willing to try something new

An acupressure mat, is a self-applied acupuncture device commonly made of a foam mattress covered in cotton sacking and embedded with hard plastic disks containing protruding spikes.

I’m all for trying holistic medicines. I don’t like taking drugs for the sake of taking them hoping that this time they will work. So I ordered this mat from Amazon for £25. There seems to be a massive difference in prices going up to over £100 and no idea what what them better but they all looked the same. I’ll let you know how it goes.

Watch this video on how to use the mat

Check out my Pinterest boards!

Click on image to go to my Pinterest boards.

If you’re anything like me and constantly searching for that miracle cure, that great home remedy recipe, that gadget that was recommended, you browser bookmarks probably look like mine…..a mess! I’ve been using Pinterest for years now and don’t know why it never occurred to me to make a online scrapbook of all the things I want to try or have tried.

So have a look, here’s one of my boards I thought you’d like on Pinterest… https://pin.it/fpafrs4b4xfyl2