My Gift. 

My Gift. 

Recently I’ve been going through a really difficult time. A change in my medications has gone incredibly wrong, meaning I’ve been flaring in every sense of the word. My pain levels have skyrocketed, leaving my meds completely unable to make any dent in them. I’m having hot and cold sweats, shakes, breathlessness and tremors. My racing heart is causing me to be dizzy and trip over my words, and my feet! On top of all that I can’t sleep at night, even though a constant exhaustion sits over me like a suffocating toxic fog. In short it’s been hell. Complete hell. 

My usual look at the moment.
This morning I woke up feeling much the same as I have every other day. I’d only had five hours of interrupted, restless sleep. I was exhausted and in pain. But, I was determined to get out of the house. As I laid in bed and waited for my meds to kick in, something amazing happened. They actually kicked in! For the first time in a long time the haze of exhaustion began to lift and my pain eased just enough to move around without visibly wincing! I couldn’t believe it! 

Of course I did what anyone would do. I made the most of it! In the car we hopped, and down to the park we went. This time, I didn’t sit on a bench and watch as my husband played with the kids. I got up, and I joined in! Today it was me taking our baby on the rides. It was me playing along. It was me being ‘fun mum’. Yes it hurt. Yes it took my breath away. Yes I’m now in bed feeling like I’ve been run over by an articulated lorry. But it was so so worth it!! It’s amazing the difference a few hours out (if that) can make to your mental state. 

Soaking up the sun and charging my batteries for fun!
Ziplining , slow and low! (I may have kinda fallen off.. but I was scraping along the floor anyway so it was fine!)
Little man loved the swings!
Me and both my boys on the slide.

Technically today I did the wrong thing. Technically I should have paced myself. Taken it steady. Reserved some energy for tomorrow. But what’s the point? What’s the point in saving myself, when I have so many overlapping conditions that tomorrow I can still wake up unable to function? I cannot live like that. I cannot and I will not. These last few months have been an exhausting whirlwind of pain and symptoms that’s left me feeling a shadow of myself. Yesterday I was low. I was the lowest I’ve been in a while, crying hysterically at the doctors receptionist when they couldn’t get me an appointment. Sobbing in the bathroom at 2am as I tried to shower away my searing pain. I needed a day like today. Today was my body’s gift to me, I’d be damned if I was going to waste it! 

As for tomorrow? Well, if I’m out for the count (which I likely would have been anyway) then at least I have my wonderful few hours at the park today to look back on. To me, that’s worth it. 

Advertisements

;

;

*Please note this post contains adult themes and possible triggers. 

I don’t know how to start this blog. Three, four, five times, I’ve begun typing and deleted each and every word. Tracing back on myself until I get back to blank, white, nothingness. Ironic really, because that night that’s exactly what I felt. Nothing. A huge wave of calm came over me. My brain switched off. My heart switched off. Suddenly all I had was nothingness, and my pills. 

I have chronic illness. I love every day with extreme pain and exhaustion. More than any pain I could possibly describe to you. In every single joint of my body, all the time. Sometimes it’s a dull ache, resounding through my joints like the hard beat of a huge base drum. Other times, it’s as though nails are being driven, hammered into each single joint. There’s many different ways the pain manifests. But it’s always there. Always clawing at me. 

The exhaustion makes you feel like you’re caught under a thousand lead weights. Tied to you. Pulling at you. Holding you down. Like every day has been a marathon run, with no time to recover. I often liken myself to a flat battery. From the outside I look like every other battery. But I’m not. I’m useless, running on empty and desperately trying to get through the day. 

But more than the physical pain and exhaustion. There’s the emotional. To see friends move on and leave you, because you couldn’t make it one too many times. To be in relationships where you’re told you’re a burden. You’re useless. You make life harder. That just talking to you is depressing. That doesn’t feel good. To see the disappointment in your child’s eyes when once again it’s a no to the park. It all adds up. It makes you forget the good times. 

So, back to that night. That night was in between Christmas and New Year. I was estranged from my family. My Grandfather had just passed away. My daughter was staying with her father. I had just been told I wasn’t worth loving by someone who had been in my life since I was a child. I was alone. Completely and utterly alone. Not only physically, but emotionally and mentally. I truly felt I had nothing and nobody. Nobody except my beautiful girl, but she was staying with the other half of her family. Her family who were healthy and could give her more than I ever could. 

I was in a dark place that night. A quiet place. An empty pit of nothing. No sensibility. No words of wisdom filtered through the dark. Nobody was there to tell me my girl needed me. That things would and could get better. That though I will always be ill I wouldn’t always be so alone. 

I thought of my Grandad. Of seeing him laid in the mortuary. The pain of life no longer etched on his face. He was at peace. I fixated on the peace. No more pain. No more heartache. A ‘better’life for my girl. Something inside me tripped. 

One hundred and seventy five. They went down like candy. I felt nothing. Handful. Gulp. Handful. Gulp. Handful. Gulp. 

I didn’t know how many I’d taken. That was what they told me. The lady that turned up at my house. Hoisted me off to get checked out. I didn’t call them. Someone in a support group for my health issues figured it out. She phoned. For that I’m very grateful. Though ironically, it wasn’t needed. The tablets I’d chosen only served to cause severe symptoms of the health issues I already had. They would never have done more than that. 

Perhaps it was fate. Or perhaps my Grandad was looking over me. Loving me and protecting me from myself. I choose to believe the latter. 

When I think back on that night my heart jumps into my mouth and my chest tightens. I can’t believe I thought it could ever be right to leave my darling girl. I ant believe I was unable to see the beauty and love in my world. Still now it brings me to tears. I’m so so incredibly relieved of a my tablets I chose the ‘wrong’ ones. That I’m anal enough to only choose the one. That my friend deciphered my cry for help. 

Starting the next day I made changes in my life. I decided that if something wasn’t working for me, it stopped. No more punishing myself for not being enough. No more going for the wrong guys because I didn’t believe I was worthy of the right ones. No more of all of it. 

Years on and things are completely different and exactly the same all at once. I am still in pain every single day. I am still exhausted. I still often feel useless, a burden. But I am not alone. I am married to a man who loves and supports me to the very best of his ability, as I do him. I have a small group of true friends and family, who support me in what I can do and don’t hold what I can’t do against me. I have more children, my beautiful girl has wonderful siblings. I live my life as best I can. I laugh and love, I cry and don’t feel (too) bad about it. The difference between now and then is the difference between night and day. 

Though I will always regret what happened that night, I’m grateful for the changes it forced me to make. I looked critically at my life, and at the things that weren’t working. Then I changed them. It ashy easy, but with each change a piece of me returned. I became more than just my illness. I found my life, my family and my happiness. 

Sometimes you have to hit rock bottom to work your way back up. I will always be disabled. I will always be in pain and exhausted. But now I know I can still love myself, and be loved. I deserve happiness, and so do you. 
*If you of anyone you know are struggling with suicidal thoughts please contact your doctor or nearest hospital. 

U.K. Call Samaritans: 116 123 

U.S. Call National Suicide Prevention Lifeline: 1-800-237-TALK

Jaymee’s Battle.

Jaymee’s Battle.

Our story begins when Jaymee became a mother, at the age of twenty. Soon after she was diagnosed with Postnatal Depression, a fairly common problem that many mothers face. As is so often the case, Jaymee was given antidepressants and sent on her way. But Jaymee knew deep down something wasn’t right. Months passed, and she didn’t improve. Those months turned into years and still Jaymee was no better. During this time the doctors tried many different tablets, but none of them worked. The only thing Jaymee gained from the medication was a detachment from her feelings, a numbness to life.  This feeling (or lack of it) enveloped her, it became her new normal. Her coping mechanism to get through the endless days of feeling broken inside.


Around 2013 Jaymee got to the point where she lost herself completely, she had a complete mental breakdown. The medication she had been on had only delayed the inevitable. She describes herself as “high as a kite one minute, the next (she) was the lowest (she’d) ever been”. Jaymee was thrill seeking, and taking crazy risks, with no consideration for those around her. Yes, she admits she had fun at first, but there comes a point when the fun stops and all you’re left with is emptiness and regret. It’s not fun anymore when you’re constantly hurting those who love you. You’d think that being a mother would help put things into perspective, but alas it didn’t. She couldn’t see beyond her own selfish desires. Looking back it was a very dark time in her life, though at the time she didn’t realise.  

Jaymee says, “This is a place I don’t want to go back to.  It was awful. I hurt and blamed the ones who loved me, pushed away people who cared.”

Along the way Jaymee was unkind to herself as well as her family and friends. She had completely lost herself, to the point she wasn’t even Jaymee anymore. It felt as though her head just wouldn’t work how she needed it to. She was lost, adrift in a sea of confusion and extreme emotion. Eventually she snapped. Everything came crashing down and Jaymee could cope no longer. Desperate for help she did something “really stupid and regrettable”,  and though she wishes it had never come to that, she did finally get the attention of her doctors. After years of them just telling her it’s depression, here’s a tablet;  they finally took noticed and realised there may be something more going on. 

Jaymee was referred to a Psychological unit. Finally she had been guided onto a path, instead of wandering aimlessly lost through life. She remembers how the first thing they considered was Bipolar Disorder, but it wasn’t that. She remembers how it took a whole year of doctors, psychologists and psychiatrists analysing her to finally get an answer. A year of being watched, evaluated, pried into. A year of waiting, stressing and wondering. It was not easy to go through, but it was worth it. Because eventually Jaymee got her diagnosis. Her label. 

Jaymee has Borderline Personality Disorder. The symptoms of this are wide ranging and can easily be mistaken for other things, such as depression. But BPD is completely different, and as such will not respond well to the tablets Jaymee had previously tried. Mind describes Personality Disorders as being a type of mental health problem where your attitudes, beliefs and behaviours cause you longstanding problems in your life.

Being diagnosed didn’t make all Jaymees problems go away, but it did help her to understand herself a lot better, to start being kinder to herself. Her diagnosis meant she was able to explain to the people she loved why she behaves in the way she does. It helped her learn to accept herself again, and take some control back. She was finally put on medication that had been properly tailored to her needs. Medication that actually helped. But even more importantly she was given a team of people to support her, and guide her through learning to live with her new label. She had counselling and went on courses to help her manage her emotions.

The journey was just starting, and it was to be a long and difficult one. Getting a diagnosis, a label on your back, does not automatically make things easy. There were many bumps in the road, and Jaymee almost gave up on herself so many times. But she didn’t, she caught hard and she’s still here today, stronger than ever before. 

Last year Jaymees life took another turn, tragedy struck and she lost her Father. The man she had worshipped and adored all her life. Such a cataclysmic event is enough for anyone to fall off their path in life, let alone someone with mental illness. But instead Jaymee did the opposite, she grasped her life in both hands and took back control entirely. Starting by coming off her medication. Now, Jaymee admits this was probably a rash decision, and it’s certainly not something she would recommend to others, but she knew it was something she needed to do. Jaymee needed to grieve for her father, to work through her pain and her loss, she knew this wouldn’t be possible for her on medication designed to dampen down extremes of emotion. Her doctors disapproved, but in the end it was her choice, not theirs. But she didn’t turn her back on all the things she had learned since her diagnosis. Jaymee took those skills and used them to get through life, facing one day at a time.

A year on and Jaymee hasn’t touched her medication again, and she’s feeling better than she has done in a long time. Finally she feels as though she’s found a part of herself again. Things are not easy, she still struggles from time to time, a diagnosis of BPD doesn’t just go away if you choose to stop taking your medication. But Jaymee is learning to live with it, with pride and a new sense of self worth. This has been one of the hardest battles she is ever likely to face, and she’s done it! Eight years, eight years was how long it took to get a diagnosis. Jaymee will never get those years of her life back, those years that should have been spent enjoying motherhood but instead were full of battles. Battles with herself, doctors, and those she loved. She knew in her heart all those years ago that Postnatal Depression didn’t fit with the way she was feeling. Jaymee knew the doctors weren’t doing all they could for her, and she often wonders how her life would have turned out if she had just shouted a little louder, pushed a little harder. 

If you are struggling with mental or emotional problems Jaymee has this message. “Please , please, don’t suffer in silence, seek help if you need it and keep going until you’re listened to. Mental Illness is not a weakness, from mine I found my strength”

Jaymee bravely decided to share her story on Facebook recently. Had she not many of her friends, myself included, would never have known of the struggles she’s faced. Mental Illness is perhaps one of the truest forms of invisible illness their is.  So easily hidden, and so often seen as taboo, people can be left helplessly floundering, battling their demons alone, for years on end. Jaymee says that if even one person can be helped by reading her story, then it was worth it to share. To Jaymee, I say thank you. Thank you for letting us in, and for trying to help those in need. I too hope your story helps others, I believe it will. 


If you are struggling with Mental Illness advice can be found at Mind.org. This post was adapted from Jaymees original Facebook post.

Jennifer, Monty and their story. 

Jennifer, Monty and their story. 

Throughout the world there are thousands upon thousands of people living below the radar. Struggling just to exhist, let alone be ‘functioning’ members of the community. These people, people like me, live with disability. Together we form a huge portion of the global community, but with so few of us in the public eye it’s hard to get our stories out there. So that’s what I’m hoping to do. I’d love to give you a window into our lives, a hearty welcome and a good look around! 

Jennifer looking snazzy in her sunnies.

Jennifer is a forty two year old lady who has suffered with Spina Bifida since birth. Basically her spine did not form properly, causing her to live with a host of health problems throughout her life. These include not only crippling pain and loss of sensation, but also mobility issues. For along time Jennifer fought hard to get around on crutches, until eventually her body could not manage anymore. She is now permanently wheelchair bound. 

As Jennifer doesn’t have the upper body strength to propel herself, she relies on others to get her about. Luckily she has a wonderful husband who lives her dearly. He happily devotes himself to caring for her, cooking her meals and taking her anywhere she needs. It takes a special bond to love through severe disability, and they have it. As I’m sure you can imagine, living in constant pain and exhaustion is not easy. For Jennifer, as with many of us struggling with disabilities, depression has dogged her life. Trying its best to creep it’s way into her psyche on even the brightest of days. But she does not let it win! 

You dont need a cape to be a super hero.

Jennifer has filled her life with so much love its overflowing. How? With her beautiful pooches and pussy cats, who brighten her days with their bouncy personalities and unwavering adoration. One such companion was Monty. A cheerful West Highland Terrier, he was Jennifer’s constant companion of seventeen years. After seeing her through both good times and bad, he said his goodbyes and grew his Angel wings in August of 2015. That loss was one of the toughest to go through, and coming to terms with it has been hard. 

The lovely Monty, smiling with mum.

You’d think that with so much difficulty in her life Jennifer would be bitter? But you couldn’t be further from the truth. As soon as you speak to her you feel an eternal optimism exuding from her. This strong woman will not let anything bring her down for long. So much so, that rather than wallow in grief, she has turned the harrowing loss of her beloved pet into something positive. Jennifer has chosen to craft. She crafts through pain. She crafts through depression. She crafts through the melancholy of day after day of living with disability. In fact, she’s made so much that she’s even opened her own shop, Monty’s Makes

A handful of items to be found in Jennifers shop.

Jennifer sells a whole range of beautiful bespoke crafts. Each item can take her days, if not weeks to complete. She does all her crafts sitting down, but due to pain in her back she has to do several short sessions on and one piece. To keep things interesting Jennifer likes to hop from piece to piece. When asked about her crafting she says:

It might take a while to get things done, but I never give up. I enjoy it as it helps me to take things not so seriously. 

When visiting Jennifer’s shop you are immediately hit by the sheer volume of beautiful work she has created. From the kitch hand sewn items, to the funky jewellery. There’s something for everyone, not forgetting of course a good dose of doggy themed makes. How could she not. Here’s a few of my favourite pieces: 


I love the jade green and aquamarine hues of this beautiful bracelet. Being a bangle its so easy to pop on, perfect for someone who struggles with fine motor skills like me! Each loop of the bangle has had two of the shimmering beads attached by hand, creating a truly decadent and stunning piece of jewellery. My jaw literally hit the floor when I saw the minuscule price tag. It’s definitely one for my Christmas list! 


A sucker for anything kitch I adore these little birds. I can imagine them adorning the nursery of a well loved newborn. Or dancing merrily on a cot mobile to help soothe baby to sleep. Alternatively they’d be great looped through the Zips on handbags as a quirky adornment, looking cool and making the zip easier to grab at the same time. Another feature I love is that Jennifer allows her customers to customise these and many other items, offering a variety of colour choices. 


Finally I have to say that I ADORE this iPad holder. With the issues I have in my wrists I really struggle to hold my iPad. This is not great as I spend the majority of many days in bed, with only my iPad for company. Sometimes the pain is too bad to even hold it. My husband did buy me a small plastic stand, but due to resting it on myself, I often end up with my iPad smacking me in the face. No fun. This is absolutely perfect!! It’s sturdy and pretty and everything I could want in an iPad stand! Even better I have no doubt it could be used for mirrors and even books. I’m really feeling all the love for this item!! 

Just when I really thought my admiration for the drive and determination shown by Jennifer could go no further, she surprises me once more. Because Jennifer takes no profit whatsoever from Monty’s Makes. You see in 2002, after a harrowing four year battle with lung cancer Jennifer lost her Father. Then last New Years Eve more sorrow befell her family when her sister in law sadly passed from Breast Cancer. Even with all her own hurdles Jennifer couldn’t sit back and do nothing. So that was why she decided to create her shop and donate all profits to Cancer research. And what does Jennifer have to say about her wonderful gesture? 

I just wanted to help others, like I’ve been helped all my life. 

If you too want to help others please take a look through Monty’s Makes and see if anything catches your eye. Otherwise feel free to make a donation at Cancer Research UK. Jennifer would really appreciate it. 

**Please note this is NOT a sponsored post. No money or goods were exchanged for the writing of this post.**