Fatigue

I’ve been trying to balance days out with rest days , one day out and one day in. However I made the stupid mistake of having a day out Monday, then out for food with my boyfriend and a little shopping yesterday. I thought a short bus journey and a very short look in a couple of shops would be offset by a long rest for dinner yesterday. When will I learn to listen to my body? I was exhausted when I got home and still had to wrap my mum’s birthday presents and make her a card!

This morning I felt like I had been velcroed to my bed. My body was so exhausted I could barely move. Once getting up I was like a wooden puppet with my strings cut. I wobbled away to get ready with my joints flopping and giving way. I wobbled and waddled and flopped around and would have given up on a normal day. But it is my mum’s birthday and we had plans to hit the town…and by that I mean go and see Incredibles 2 (for the third time).

I’ve struggled to keep my body upright for most of the day. Even after waking up fully I’m still a bit floppy. Lots of caffeine and sugar have been on the menu whereas I normally try to avoid it. I even ended up dozing during the film, regularly waking with Jackjack’s giggles and gurgles. As much as I love the film there was very little I could do to stop the sleep.

Currently sat in the virgin lounge enjoying more caffeine in the form of a nice cup of tea and ready to continue our day….fingers crossed I can muster the energy to get off this sofa! 🤦🤞

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Anxiety – what does it feel like?

Have you ever woken up to find your pet lying asleep on your chest? They’re heavy and uncomfortable. A dead weight reducing your breathing. To wake them and relieve yourself of the discomfort seems rude. So you let them be happy and you deal with the consequences. Anxiety is carrying that weight around all day everyday. Sometimes we wonder if the saying ‘a problem shared is a problem halved,’ rings true. Most of the time though we bottle it up. We hold on to the weight to protect others, to keep them unburdened. Even though the prospect of our problems being ‘halved’ sounds amazing we don’t want spoil the happiness of others.

Living with anxiety can feel like there are two people battling in my head. There’s logic and there’s fear. Logic tells me people I’ve never met aren’t all talking about me. Fear, mangles their words, allowing me to pick up snippets of their conversation. It then creates a story with them in which I play the villain. No matter how hard logic fights back fear always wins.

Anxiety is always hiding in the back, but still wanting to be seen. Being short, it wasn’t an option to go to the back in group photographs, as much as I wanted to. Anytime I was lucky enough to get that opportunity I would obscure myself from view, but leaving just a small hint that I was there. A bodyless arm, a hat with no head seemingly floating in mid air. Just enough of me so I could prove I was there, but also enough that no one else would notice me.

Anxiety is taking out one earphone, for fear your breathing is too loud. It’s holding your breath up a hill so it doesn’t look like you’ve struggled. It’s writing a script for a phone call and panicking when things don’t go as planned. Anxiety influences every single thing that I do.

It feels like a sore, red, bloody thumb because you picked at it too much without noticing. It tastes like the wrong food at the restaurant, because you were too scared to complain. It smells like constantly fresh perfume and deodorant, because you’ve reapplied it ten times, scared incase you smell. It’s walking on tiptoes when shoes squeak. It’s spending your life on tiptoes, being cautious and being afraid.

Anxiety is at least one in ten people you encounter everyday, even if you don’t notice it, it is there.

*Based on my own experiences with anxiety*

Moving on

I used to be a very negative person. I would hold on to grudges like they were the last turkey in the store on Christmas Eve. I wouldn’t let go, I couldn’t let go. I would hold on to the negativity to my detriment. For a while I think I was quite bitter. I was angry at the world. I could play it off as teenage angst, not that I was particularly moody and I wasn’t really badly behaved. I was just angry and confused by the world. I couldn’t accept my life and I took it out on the world in my own way, by being negative, silently hating everything.

My biggest issue was holding on to things, grudges, grievances and insecurities. I defined myself by things that made me unhappy. Somewhere along the line my attitude changed. I started to move on, forgive people and try not to let little dramas ruin my life.

I’m not saying positivity will cure all ills, or will make you feel completely better. It won’t, but it helps. There are still people that have hurt me or betrayed my trust and I won’t ever forget that, but I’ve forgiven them. I’ve let go of the pain, the anger and the self-destruction it caused.

I believe in second chances, but not chance after chance after chance. It’s naïve to think that someone who causes upset repeatedly, will suddenly change. I’m not afraid to cut negative people out of my life, but I’ve forgiven them. Holding on to all that pain isn’t good for anyone. It didn’t make the situation better. It didn’t change what had happened. It didn’t stop the hurt. Letting go and moving on was freeing. I could get on with my life.

Sometimes moving on involves taking action. I recently tried to reconcile with someone that I fell out with years ago. It was something that always bothered me. I would dream about it. My subconscious told me something wasn’t finished. Even if I thought I’d moved on I clearly hadn’t.

It didn’t go well, she blocked my message without responding, which I felt was a shame. But by reaching out even though it got rejected, helped me move on. I did my bit to sort it out. I forgive her for all she did to me, I forgive myself for not trying harder and now that chapter of my life is complete. I can move on now knowing that I tried. I gave the olive branch and if she didn’t want to take it, that’s her prerogative. I thought I’d feel angry and upset that things hadn’t gone how I’d hoped or planned and a couple of years ago that’s exactly how I would have felt. Now I feel at peace with it. I tried, I did my bit and it’s time to move on. The past is the past, so it’s time for me to get past it.

🎵Oh I do like to be beside the seaside 🎵

I had spent all of the day before preparing for the beach. Usual things like preparing my lunch and deciding what clothes to wear. I dug out the biggest backpack I could find and filled the front pocket with all things medical. A job I routinely undertake when changing bags. A purse full of medications, tens machine, headache stick, heat pads, a cream for the pain. Despite it being a a large front pocket I found myself struggling to zip it up. I knew it was unlikely that I would need all of it, but based on previous experiences I knew to always keep these things close at hand.
Most of the day I had been sat on the sofa, in pyjamas chopping salad veg for my lunch. I’ve been on the rabbit food for a week now hoping to shed a few pounds. I found this surprisingly exhausting, by the end I could hardly move. I crawled upstairs and flopped on my bed where I stayed for the rest of the evening.
I woke up a while before I was due to be picked up. Dressing can be one of the most difficult tasks for me, especially in this heat. I try to pace myself but inevitably my face ends up dripping with sweat, I’m breathless and in pain. Thank goodness for setting spray, without it my mascara would trickle down my cheeks like a murky stream. After dressing and joyously finding out my friend was running late, I rested and composed myself. I had half an hour to calm my heart rate and slow my breathing back to normal.
I’m always a little nervous when going out with my friends. When you’re completely able bodied you don’t notice the little things that would make life difficult to someone like me. I never used to, like most people I took things like that for granted. Even after my diagnosis I was still quite mobile. It’s only in the last two years that I have really found it difficult. I now look upon the world with different eyes. Things that were invisible to me before now are glaringly obvious. I was afraid that my friends wouldn’t consider my abilities (more like my lack of ability!) I never for one moment thought they would do that to spite me, I just feared they wouldn’t realise the small things that make my life difficult.
I was mistaken. The first thing Ella* did after I opened the door was take my camping chair off me, to lighten my load. She then asked whether I would be more comfortable in the front or the back of the car. As designated driver, it was her choice of destination and she made sure to find a beach with easy access. The only problem with that was, the tide was in. I could get down the beach with ease with the ramp but unless I wanted to bob up and down in the sea in my camping chair, that particular beach was a no go.
So we went in search for another. After a while we found one, which had at least some sand for us to sink our feet into, and joy of joys it had a ramp! It was steep but with Annemarie carrying my chair and Zoe helping me balance I managed. That is until we reached some steps, or should I say mini cliffs. They were huge! Even an Olympic hurdler would do a double take at the size of these steps. Zoe and Annemarie went down them first and alternately held out their hands to help support me as I jumped down.
When we were nearly at beach level we came across a ramp that was practically at a 45° angle. If by some miracle someone in a wheelchair had managed to conquer the White cliffs of Swansea this ramp would have struck fear into their souls. Due to the angle, it suggested any person in a wheelchair that dared to undertake it, would be jet propelled down and launched off the edge. Undoubtedly the chair would get stuck in the pebbles causing it’s user to be flung into the ocean. Not exactly wheelchair friendly.
I had brought a big umbrella as a makeshift parasol. However it came in handy as an additional walking stick. I waddled across the pebbles with my arms outstretched, gripping onto my stick and umbrella for stability. I’ve no doubt I looked like a chubby ginger praying mantis as I tried to reach the sand. When at last we reached the sandy shore, we set up camp to relax.
Sitting in my chair with the warm sand between my toes and a gentle breeze felt like heaven. The smell of the sea was refreshing and the sound of the waves lapping against the shore was soothing. After about an hour of resting I decided to have a little paddle in the clear blue sea. My chair had buried itself into the sand a bit but I was able launch myself into a standing position with the aid of my stick. I decided not to use my walking stick to tackle the sand as it just dug itself deeper into the ground with every step. I chose instead to rely on Annemarie’s support… That was a mistake. I realised after saving her tripping over a pebble that she was just as clumsy as myself, if not clumsier. But it wasn’t far to the sea. We giggled and screamed as the freezing water touched our toes. The others were braver than I and went right in to swim. I had ‘forgotten’ my swimsuit so I just walked in until the water just touched the bottom of my jeans.
The next issue that arose was my camping chair breaking. I ended up getting stuck in the mangled mess. In the end I was essentially sat on the sand whilst squished between the frame. Once the girls returned from the water, they helped pull me up off the ground then Ella* found a huge smooth rock where I could sit. The girls then moved to this area so I was included. The rock turned out to be more comfortable that the chair, even before it was broken.

Although I was experiencing moderate pain at this point, the warmth of the rock helped a little. We spent the rest of the evening chatting and sunbathing. Well the others sunbathed I furiously applied more factor 50 ever 15 minutes for fear I would burn.
Going to the beach is something I’ve not really done a lot since being ill. I was scared I would be left alone and miss out because I can’t run or play. I told my friends I was happy not to go with them, because I didn’t want to stop them having fun, but they insisted I went along too. They were so helpful and considerate of my limitations. They helped me feel normal again and that meant more to me than I think they realised.

*Name has been changed

Mam and Dad

When expecting a baby most parents expect to care full time for their child when they’re young. To help them become independent and support them through difficult teenage years before they go out into the big wide world and begin their lives as independent young adults. 18 years of care then like baby birds it’s time for them to stretch their wings and fly the nest.
I doubt my parents thought any different. I grew and developed normally I went from crawling, to walking, to running (admittedly not very often,) and then back to crawling? Figuratively and often literally I am unable to stand on my own two feet. I have regressed back to that baby bird, safely guarded from harm. Even on good days I have to crawl on all fours to tackle the stairs. On bad days, I can’t move, my mum has to help me dress, she prepares my food and supports me when my legs fail. She washes my hair, fetches and carries things when I can’t walk to get them. She holds my hand when I’m scared and wraps her arms around me and clutches me tightly when I’m sad. Even though I’m now taller and bigger than my mum I will always feel small in her arms.
At nearly 21 I should only be living at home part time and then living away at university , or I should cook and clean and work. Instead I lie on the sofa and wait for someone to come home. This is not what my parents had planned for me and more importantly for themselves.
I feel indebted to them, but then most people feel this way about their parents. But my mum and dad have had to do so much more than was ever expected of them, and the most astonishing thing of all, they don’t mind. I know my parents would rather they didn’t have to support me in this way, and I wish they didn’t have to either. But when I tell my mum she is a carer she says ‘I’m your mum, it’s my job.’ It was her job when I was young, now she is going above and beyond when was expected of her.
I am incredibly blessed to have such wonderful parents. My mother is my best friend, I love nothing more than sitting together in a café, hands wrapped around a mug of hot chocolate as we gossip and people watch out of the window. We always have a slice of cake each which we split so we can try both types. I am so happy we have the relationship that we do. As children get older they can lose a closeness with their parents. In our case, as I’ve grown up we’ve become closer.
I know my father struggles with my pain more than most. I can see the sadness and concern in his eyes when I’m in pain. He’s always been fairly physically fit, he loves to walk. I could never understand the appeal of ‘going for a walk’ but for my dad, there is little better. For someone who will walk everywhere given the choice it has been hard for him to adapt to my limited mobility. Despite his love of walking he does his best to avoid it when he is with me. For a while he couldn’t get the balance right. Even now he still struggles a little but he is trying. He’s a very quick walker, even at the peak of my physical ability his stride was more like a light jog to me. For a while he would set off at his normal speed and I would hobble behind with my walking stick, breathless and sweaty. But now he has learnt more about my abilities, he can fairly accurately anticipate what I will be able to do and what is too much.
My dad is the worrier, he is constantly making sure I’m okay. When my mum wants to go out somewhere, my dad will agonise over leaving me alone all day. He will worry if I’m alright, whether I’m too lonely, whether I’m sad. Most of the time he will encourage me to go with them, partly to get out of the house and partly to keep and eye on me and my wellbeing.
I often feel incredibly guilty that I have to rely on my parents in this way. I have to keep reminding myself that being ill isn’t my fault and there’s nothing I can do about it. Even so, I wish I could take care of myself, even for a few days to give my parents a break. I know it gets to them sometimes. Particularly my mum. I rely on her the most. She is the one that has to help me take basic care of myself. I know how annoying it must be having to go up and down the stairs like a yo-yo getting things for me. I feel terrible asking but the stairs crease me and I know I will struggle. My mum knows this too which is why she does it. She knows it’s not laziness, but even so it’s tiring and irritating but she does it without complaint.
I love the saying ‘to get the rainbow, you have to have the rain,’ and we’ve had more rain than most (not just because we live in Wales.) Despite the figurative downpour that is my life, my mum and dad are always there. I am truly blessed to have two parents that love me unconditionally, that hold me close during the bad times, soothe me when I’m in pain and are there to celebrate with me during happy times. Sadly according to many fibro forums, a lot of families are unsupportive.
It seems it is a rarity to have such an amazing support network. It just makes me realise how lucky I am.
Mammy and daddy, I love you to the moon and stars and back. To the Andromeda galaxy and beyond. Thank you for being amazing, you are my heros. 💕

Anger

I try my best to stay positive. Barely a day goes by when I don’t say “ah it is what it is” or “I’ll be okay.” I say these not for my own benefit but to reassure others. I didn’t really notice I did it until I fell last week. My ankle gave way causing me to tumble down some stones steps, resulting in a rather attractive cankle and a leg that resembles an overripe banana. I was in a lot of pain having landed with full force onto my ‘good’ knee. I could feel my eyes welling up through shock, embarrassment and pain. I could see the concerned faces of my mother and friends and I smiled. From my expression you’d swear nothing had happened. I beamed from ear to ear and laughed at my clumsiness. Saying things like ‘ I’ll be fine, just a little sore.’ Then after managing to stand back up I hopped to the car with the aid of my mother’s shoulder.
I could still feel the tears trying to force their way out of my smiling eyes. I allowed myself a moment to contort my face into an expression of pain but only when I was sure I couldn’t be seen. Then I turned, smiled and waved goodbye to my friends from the car. When it was just my mother and myself I let the façade slip. I still tried not to give in to the pain but I let myself show the discomfort and pain.
My reaction got me thinking about how I conduct myself around others whilst in pain. I’ll take a moment when their backs are turned to screw my face into a grimace, I’ll laugh and joke to ease concern and I’ll lie or downplay how I feel. It made me realise I very rarely give myself time to feel angry and upset with my situation. I’m so used to thinking “I’m glad it’s me that lives with this rather than my loved ones,’ and ‘it could be worse’ that I don’t give myself time to say that living like this sucks. I didn’t deserve this, I am a good person with a bright future and I didn’t deserve to be this way.
It made me realise it’s okay to be angry, and to think ‘why me?’ And then I cried. Partly from anger and partly from the relief that I’ve let myself feel what I’ve tried not to for years. After getting all this anger off my chest I felt a wave of relief. I felt I had let go, I let go of a hidden emotion. I didn’t hide away from what I felt or protected someone else from my true feelings. I did it for me.
I asked ‘why me?’ and ‘what did I do to deserve this?’ I didn’t ask for an answer, just to get it out there. Just to release the burden I tried to carry. I stopped being ‘brave’. I was angry and selfish and it was amazing. Like Pandora’s box I released all the bad thoughts I had locked away and I was left with calm. The knot in my stomach dissipated and I felt at ease. I let go and let myself feel what I needed to feel. Fibro sucks, it’s horrible and cruel and I didn’t deserve to get it, and I’m okay with it.

“Don’t Stare”

People see the walking stick and look away. I can see the questions flash over their faces. “What’s wrong with her?” “She’s so young?.” I can practically see them holding their tongues. There’s concentration in their eyes trying not to look at the stick. They force eye contact and awkward conversation. Even people I’ve known for years that may not have seen me with a stick have difficulty with it. They look away. They barely acknowledge me, a quick nod in recognition then hurriedly walking away. Or they avoid simple pleasantries such as “how are you?” In years gone by I would have confided my deepest darkest secrets to them. Now they feel uncomfortable around me.
My personality hasn’t changed since I acquired a stick and a bit of limp/waddle. But people don’t see that. It’s like I have access to Harry Potter’s invisibility cloak whenever I use it. People do their best not to look. They see me and they may smile but the moment they see the stick they blank me.
It’s not done out of rudeness, we were all told when we were young not to stare at people that look ‘different’. They are trying to be kind. It’s a sort of considerate ignorance. If you ask anyone who is ‘different’ in anyway they don’t want to be stared at but equally don’t want to be ignored. We are people. We are not our disability. We don’t want pity, or for you to feel sorry for us. We just want understanding.
I’m no longer embarrassed about my condition. I’ll admit I was to begin with, but now I’ve come to terms with it I’m happy to talk about it for hours. Sometimes people will ask “I hope you don’t mind me asking but why do you need a walking stick?” I’m fine with the question, I’ll give you answer, to educate you on chronic pain conditions. In fact I’m happy to. The more people that know and understand it, the more likely it is that it will be accepted. The people that ask often suffer with some condition or need a mobility aid. They understand what it is like to be invisible because of illness.
Don’t be afraid of us. It’s just a walking stick. The worst I could do is hit you. It’s just a wheelchair, the worst thing I could do is re-enact wheelchair rugby and ram my chair into your legs. But I wouldn’t do that, and neither would most other people. We don’t bite, we’re not scared of you, we just want compassion and to be treated like a human being.

China doll

I am a China doll. Fragile and delicate. I live my life through other people. I sit and I watch as people live while I am sat, still and sullen.

My skin is porcelain white. Natural flushed cheeks are a stark contrast. Small blushing lips. I am peppered with freckles, I am a breathing dot to dot. Plaited pigtails hide my ears.

Squeeze me too tight and I will shatter. Apply too much pressure and I crack. Like lightening has struck my skin. The cracks will just get deeper, darker, more visible. I can feel them. I feel the cracks in my armour, my shields are dented. I feel my strength fading.

Eventually I will break and be completely unfixable. You will stare at the puzzle, the pieces of my life. My jigsaw will miss a piece and never be complete.

I am ornamental. Kept away from people, hiding from potential danger. I sit high and watch people live. I watch them deal with their problems. It’s easier than facing my own.

My own life is a story to me. It’s unreal, unbelievable. My memories are made of other peoples fairytales. I am here but not present, in my past I was just a presence. An ethereal being.

I watch myself through someone else’s eyes. I am not in control, I have no influence. I just watch. I watch as new cracks appear, I wince when they get deeper. I feel my structure breaking down.

China dolls aren’t meant to be played with. They sit still, gather dust and not cause a fuss. Seen but not noticed. There but not real. I am a China doll but I used to be human.

Trust

My trust is a hard thing to earn. I’m a naturally suspicious person. My anxiety causes me to overthink everything. I’m paranoid and scared of everything, particularly anything new. So when I meet people I can seem standoffish and rude. I don’t mean it, in a way it’s a defence mechanism, by not corresponding I protect myself from potential danger.

It takes me a long time to allow myself to trust someone. For some people, it could be a couple of days, others could take months. Forging a bond of trust over that amount of time is difficult. It’s a long process of me being able to believe in someone else. To know that they will stand by me and support me. That they will keep their promises and not hurt me. If I’ve been able to override my naturally cautious nature then I wholeheartedly trust you. It means I’ve worked on my fears in order to have faith in you. I’ve become comfortable with you. I have let myself be open and honest with you. I have let you in to my most personal thoughts and feelings.

So if you break my trust, you help my anxiety. You pander to my paranoia. You feed my innermost fears. Once that trust is broken, it can never be restored. No matter how hard I try to resolve my hurt and anger towards a person who broke my trust, I will never be able to open myself up with them again. The voice inside me will use this to stop me getting close to new people.

I try to forgive those that have hurt me, but I never forget. Every time I see them, I will remember. Your actions will change my future and my thoughts in ways you will never understand. Trust is a privilege, if you break it, you will never have it again.

Mind and body

Mind and body are supposed to be harmonious. They should coexist and be balanced and equal… Well not if you have fibromyalgia. When my mind is working effectively my body isn’t and vice versa. On a good day, my thoughts are clear, I feel intelligent and eloquent. On a bad day I can just about manage grunts and ughs like a comedy depiction of a cave man. My brain goes on a little holiday leaving my verbal skills practically non existent. Luckily for me my mother speaks ‘Hannah’.

“Urguh huh!” – “Oh she wants a drink”

“Flugda brrrdm?” – “Yes, its Monday today.”

“Eeeeerrr! Eheh! Brrrup?”- “No, Great British Bake off isn’t on today.”

Aside from the verbal vomit, my fibro fog makes me incredibly forgetful. The phrase “I’d forget my head if it wasn’t attached” doesn’t do the forgetfulness justice. I’d forget my head, my body and what planet I came from. Couple that with my weird word-like warblings and I would definitely be classified as an unearthly being.

On a good day however, I can join in eloquently with polite pleasantries….from my bed that is. Odds are if my brain is working my body isn’t. This to me is the most inconvenient of the two options. I hate being stuck horizontally and completely inactive. My mind is wearing the yellow jersey in the Tour de France, but my body closely resembles Homer Simpson on his famous couch.

When you live with such a diverse condition such as fibromyalgia mind and body can’t maintain equilibrium. At least not for the majority of the time. But those wonderous days where they work in harmony are glorious and for those days only, I feel like a real princess.