Cushions strategically placed; under my knees, two behind my back, one around my neck, one either side of my shoulders and one under each arm, finally after looking like something from a Bensons for beds advert I’m ready to start blogging from my bed. Five minutes in I must stop, my shoulder feels like its hanging by a thread, wrist throbbing, head pounding and eyes stinging. Frustrated I reluctantly place my laptop to one side, resigning myself to the fact my body will not play ball. I quietly tell myself those 4 words that have become somewhat regular in my vocabulary “I’ll try again later”.
Imagine starting each day with a certain number of spoons, sound strange? The spoons are a metaphor, they are a measurement used to track how much energy you have throughout the day. Each activity requires a certain number of spoons which can only be replaced when you recharge until the next spoon becomes available, this could be minutes, hours, even days. Bear in mind you don’t have an unlimited supply of spoons like a healthy person, you’re very much rationed on the said spoons. You don’t have an unlimited amount of possibilities or energy, you are unable to do activities without effects and consequences. You have constant choices to make and consciously have to think about things the majority don’t. Spoons are used for the most mundane of activities such as taking a shower, drying your hair, getting down the stairs and even being upright. You can see how rapidly your spoons are consumed within the first hour of the day. Frustration builds as you have run out of spoons, you’re stuck in bed, waiting for the next spoon to arrive so you can load the dishwasher. Suddenly every aspect of your life is a challenge. Everything that was once simple, not even entering on your radar becomes a task, difficult, hard work……. a spoon taken. Every tiny aspect of your life must be thought out and planned, for every action no matter how small there is a consequence. Living your life with a limited and unpredictable amount of spoons each day isn’t easy. There is always a block you have to navigate whether it be adapting an activity as simple as taking a shower, allowing someone to help you or simply having to wait until the block decreases in size and you can just about clamber over it. You can imagine with the number of spoons used up on what were once, easy everyday tasks that there isn’t too many left for doing the things you love, the things that make you, you.
Over the years my ability to live a ‘normal’ life was fading yet I didn’t know why. The same flakey response “I’ll have to see how I am” when asked to do something. I found myself constantly having to justify my symptoms and just why I had to see how I was. I didn’t have a name for my symptoms but I knew the ability to commit to anything had gone. I had no control over my body from one day to another. I felt sitting on the fence with the above flakey answer was far better than 100% committing only to let people down or outright say no as on the contrary, I didn’t want to miss out. If I managed to make said plan, military planning would ensue “I can’t come for the meal but I’ll meet you after, I can’t drink either but I’ll have a brew”, “I won’t come for the meal but I’ll meet you at the cinema”, everything had to be altered in some way to enable me to make it. Boy did I then suffer for days after, I knew it wasn’t normal to be so sick, exhausted, pain so high from sitting in the cinema or going to bed at 12pm , nothing majorly taxing for someone in their late 20’s\early 30’s. Weddings and Christenings would be hard as they were long days, I often sat at the table as people were tucking into the wedding breakfast whilst I handed my food over to Nick (he loved it) filled with paranoia that people were watching me and wondering why I wasn’t eating. Fearful people thought I was being rude and shunning the gorgeous food before me, feeling awkward as to where to put my face whilst everyone was tucking into their food like normal people. I would then slip off to the car or hotel room if we were staying over and tuck into a light gluten free snack and having to wait a while for the pain to die down. Everything was hard work, I was so scared people thought I was being fussy and awkward that when an invitation came in a sort of dread and anxiety came over me. I found it difficult because before I got ‘really’ unwell 7 plus years ago I would eat anything, attend the opening of an envelope as I didn’t want to miss out, loved a glass of red, would do anything for anyone and would well and truly go with the flow. I had experienced that life, that fun, those happy times and now they were becoming few and far between. I missed so many outings, weekends away, holidays, gigs, meals out, everything social that brought people together was passing me by, my only connection through looking at the pictures on social media. I would often cry, get angry and bitter that I had missed yet another event. I began to feel like a spectator of life, it was lonely.
In recent years as my capabilities have diminished further It feels like I am watching myself go further into the distance, out of reach. Each day my world gets smaller, I don’t recognise myself. Im a million miles away from who I once was. I feel lost.
What makes us who we are? Apart from the obvious genetics and without getting too deep into psychology. What are some of the building blocks and fundamentals that help form our individual personalities? Hobbies- the things we like to do in our spare time often to relax, break a tough week at work up and the things we take enjoyment from. This might be going for a few pints with friends, painting, photography, running, swimming, going to Old Trafford (of course) to watch the footy, spa weekends…. the list is endless. Our network of friends- chatting with them, socialising with them or discussing the latest episode of line of duty, our ability to function and communicate. Our jobs/careers- how they make us feel, a sense of purpose they may give us not to mention the wage to ensure you are independent and can take care of your needs. Our families, children, our individual looks, hair colour, fashion- whether you’re a jeans and t-shirt girl or a glam chick, it’s part of you. We all hold these various blocks in different regard, some are more important to us than others but essentially, they are a variety of blocks that make us who we are. Imagine those fundamental blocks being taken away from you one by one like a game of Jenga. Eventually and inevitably the tower you’ve spent your whole life working hard to build falls, the structures lost, this is no different to what it’s like for people living with a plethora of chronic illnesses, people like me.
I held my job in high regard, I worked hard and I was good at what I did. I felt very lucky that early on in life I knew what I wanted to do and that was to help vulnerable children and families. I had 14 glorious and at times trying years doing this in various capacities. It gave me great pride and a sense of achievement every single day, this was what I was meant to do. Being too unwell and losing my job was devastating. A devastation I kept very much to myself, there was so much going on with my health there wasn’t room or time for even more emotions then. At this point my world felt like it had crashed at speed, I’d lost everything I had worked for. I had grappled onto my job and worked through the most awful symptoms and tests the best I could for such a long time but I could no longer manage. For those that know me well, I do not give in or give up easily so when my hands are held up it really does mean the white flag is out, I surrendour. I cried for days, I felt I now had no purpose and no position in society. I loved my job and it was another thing robbed, at times I felt angry and bitter. The ‘why me’ and ‘it’s not fair’ came out a lot. I worried what people would think, I had never been without a job in my life, sometimes having three on the go, would people think I was lazy? A scrounger? Always being financially independent, being able to purchase what I wanted, within reason obviously (council wages aren’t huge) I suddenly found myself without money coming in, no monthly wage hitting my account. Although only money, when you’re used to having your own and taking care of yourself the truth is I felt degraded, I was indepenant and now suddenly my partner was having to take on full responsibility of our home, mortgage, bills and other outgoings, it felt rotten and there was absolutely nothing I could do about it.
Before the illness really took hold 7 plus years ago, I enjoyed going out for meals, drinking, partying, random weekends away on the spur of the moment, running and horse-riding. When I was at college my dad used to say ‘You’re burning the candle at both ends’ I’d race home from a 12-hour shift on a Saturday at Tesco to be greeted by a big pizza and a bath run curtesy of my fabulous Mum. It was like challenge Anika, I Would have a 45-minute turnaround to get said pizza consumed, bath, hair done and makeup on before I met the girls at the Hare and Hounds or ‘the dogs’ as it was nicknamed, It wasn’t a normal week without going there at least three times!! As the years passed and these activities became harder to undertake I sort of ‘trouble shooted’ what I could do from home to keep myself occupied. I began crafting and I loved It, it was relaxing, it took me into a little world away from my symptoms. I made items for people and people were very complementary. As time went on I found I had to change the craft projects, they evolved along with my symptoms. My head and neck became so painful that knitting and button pictures were out, next to be struck off was my sewing machine, painting and drawing. The final craft I tried was candle making until my shoulder continued to buckle and tremors too great to carry and pour hot wax. I valued my nice kitchen and my skin!!! All the crafts I did through pain from the start, but there are levels of pain and when the pain was too great I knew it was time to hang up my needle and thread. I had tried to create a positive from being unable to go out and now I was unable to even do this. “I may as well just sit in bed and not move, I can’t do anything”. Angry, upset and defeated. Everything had been taken away, everything.
Socialising with friends out of the house was out, my days taken up with hospital appointments and pain that demanded to be heard my only option was to have friends round. Even now I have to cancel as the symptoms are all too great, flakey Ali again. Letting my friends see me behind closed doors was hard at first, I felt embarrassed, they never made me feel this way, this was my problem. I could no longer go the hairdressers, Nick became the new Nicky Clarke, often too poorly to wash my hair and put my nice clothes on I resembled Worzel Gummidge!! I’d lie flat and talk with friends, catching up on their life and them on mine. My voice echoes in my head when I talk so it’s not easy having a conversation and because at present my hearing is disturbed from the compression I can either shout or whisper unbeknown to me!!!
Just from the limited examples above I hope they can give you an insight into just how it feels when those building blocks are taken, the fundamentals of you gone. You feel a great sense of loss. I look over old photographs with mixed emotions, I cry at the thought of not being able to do that, dress like that ,look like that and at the same time look on them with happiness that I did actually get those chances, as many don’t. It’s a sort of grief, have I come to terms with this? Absolutely not. I would be lying if I said otherwise. I always wanted this blog to be a true reflection of my journey and that includes the good, the bad and the ugly. I still feel angry, frustrated, sad, an actual empty pain in my heart and even jealous at times, I don’t think I’d be normal if I didn’t think and feel those things but at the same time I have hope. I have to believe I will get a better quality of life back, I have to hold on tight to that hope everyday as without it I may as well give up now. Do I feel like giving up? Of course, “I can’t carry on like this”, “I can’t do this anymore its cruel” however I have not been brought up to give up. No matter how hard this journey, I will continue to pick myself back up and get back on the path. I always refer to one of my favourite quotes “I don’t know how my story will end, but nowhere ever in my text will it say ‘I gave up’” I have too much I want to do with my life, too many hopes and dreams.
Although my body is unable to keep up with my minds desires, I still have hopes and dreams like anyone else. I’d say they have changed over the course of two years and become what you’d class as a bit ‘none grande’ instead of my lifelong dream of going to the Seychelles and staying in one of those beach huts on stilts, I now dream of the day I can get out far enough to Saint Anne’s Beach and feel the sand under my feet, granted I may step on a shard of glass from a bottle of Becks!! but that is the hope right now. My current dreams are more realistic in order not to set myself up to fail, for further disappointment. I have a little bucket list going and each week something else is added. I take myself off there in my mind and imagine what it will be like and hopefully one day that image will become reality.
When faced with so many challenges your priorities change, as cliché as this sounds you realise just what’s important in life. It’s not possessions, houses or holidays it’s the people who truly stick by your side in your time of need. I am very fortunate to have the best family, my parents, brother, sister in law, my partner Nick, his parents and sisters would do anything for me. They understand the conditions, my limitations and constantly support me, as do a very close network of friends. When you take away the shell its who’s inside and who stays that really matters.
This isn’t how I planned my life to go, this definitely wasn’t a destination I placed a pin on my map to visit but it’s where I am. None of us in life know what’s around the corner, life isn’t fair at times and life can be cruel. I’d say it’s how you take on what’s placed upon you, how you tackle it, fight through it and more than anything have hope and believe a better day will come.