I don’t know about you, but I was always told going to work was the most important thing in life, Because unfortunately money makes the world go round. Since then, I’ve put work above anything and everything else. Even my health. I’m sure you’ve all done the same. Right? There are multiple reasons as to why we continue to push ourselves and attend work when ill; Money, Sickness Policy, Heated discussions from colleagues and managers, And so much more. Keeping the above in mind, Living with Ankloysing Spondylitis isn’t easy.
I’ve tried to self manage my condition since I was diagnosed in 2014. However, my condition has worsened due to getting older. I suffer consistently with severe fatigue, sharp shooting pains & pins in both my legs and feet and tightness in my joints. Back, hip and bum pain, making it awkward to sit or lay comfortably . Making it difficult for me to live a normal life. If you ask me what I’d change the most, it would be my fatigue. I’m 26 with the energy of an 90 year old, even then that’s an insult to the elderly. My grandpa was 94, still working and driving. Putting not just me, but my generation to shame.
My condition impacts a lot in my life, a lot of my life. Family, friends and even partners just don’t understand what I go through and due to my age- they don’t necessarily believe me. Maybe it’s because I act as if I’m not in pain on a daily basis, although I do tend to moan on my worse days.
People who don’t suffer with my condition don’t realise that it impacts the most important yet simplistic things, such as walking, sex life, sitting, typing, having the energy to even move. The only way I can personally describe my fatigue is similar to depression. You have to battle with yourself everyday to get up, to go out, to go to work, those simple things that I wish were a lot simpler to me at my age. Having to find that motivation whilst battling through the pain and comments being made about how lazy you are.
Don’t get me wrong, I am partially lazy and I will never blame it all on my condition. We all have those days were we just like to sit in with a good film and relax. However, I mainly stay in and avoid socialising because I’m in too much pain and this requires energy that I can’t always gather.
Maybe with AS you do become slightly depressed. Most people are too afraid to say they are down, sad, depressed about themselves. Why? Why are we so frightened to admit this to the world?
I can honestly say that my physical health impacts my mental health and I’m not happy with how I am. But that’s my own fault as I haven’t got that mentality to change it and to push through it. It’s a constant battle that goes round and round in circles and you’re in a loop that you need to break out of. Otherwise you’ll never be yourself or happy. For me, I’m 26 and I’m unable to do the things all my friends are doing. I don’t have the money to do it because I’m always spending it on ways to improve my health. I feel like I’m not living the life that I’m capable of or feel like I’m not being my true self. That’s the hardest part.
Anyway, due to all of this, I’ve let myself go and let my health decrease. Partially by not taking care of myself, but then partially by not receiving the medical support needed.
I haven’t taken care of myself because I’ve pushed myself to work incredibly long hours with hardly any rest days due to the nature of my job. By this, I haven’t been able to prep and put myself on a nutritional diet that would help me lose the weight and boost my energy levels. Haven’t been to the gym that I pay fortunes for a month, (which I know everyone does, not just me!).
Medical professionals aren’t always the most supportive. Due to being diagnosed with AS, they assume everything that’s wrong with me is down to my AS and refuse to provide further support. An example being, my legs and my feet being in a horrendous amount of pain and this is something that’s never happened before. My mum thinks it could be sciatica or my AS. However went to the doctors who only gave me strong medication to take daily and advised me to go to the rheumatologist. Tried contacting them, I cannot get an appointment until June. Even when that appointment arrives, I still won’t be able to get to the bottom of what’s happening. When I even mention suffering with my fatigue, they tell me there’s no cure, nothing to give me that energy, to help with my motivation. To me that’s the lowest blow, because that’s what I need the most.
One thing I’ve learnt is to give yourself a resting period and amicable recovery time is key. Another key fact is to contact medical professionals when the medication is no longer effective. My Humira doesn’t seem to impact the pain I’m in.
The reality is no one can really help you besides yourself. I’ve learnt this over the last couple of months. I’ve learnt that I need to put myself first before others and before work. Because I’m the most important thing. That’s what you all need to remember. Regardless of what family, friends, partners or your managers think. Working on yourself to make yourself mentally and physically happy is the frame of mind you need to be in.
I’ve managed to get a month off of work to work on myself. No matter who I’ve annoyed along the way, I know I needed this. It was the Best decision I’ve made. I’ve booked two all inclusive holidays, one in Greece (where I currently am) and one in Mexico. As I need time to focus on myself.
Working on my physical and mental health. Going to the gym daily, swimming (to help my joints), eating the right foods and walking regularly. I have to say, I’m starting to feel a lot better and my health has decreased and I’m in less pain, even without my medication.
Book a sunny holiday, get away and take that time to work on yourself. Push yourself. Even if you don’t have the money, be spontaneous, like I was for once in my life. I know we have bills/ debts to pay, but don’t worry whilst you’re away. I used my salary for this month to book my second holiday, all inclusive and that’s just what I would have used this month on food etc. Do it for yourself.
I know it’s difficult and I know it may not last as we all have jobs and stressful lives to return to after. But, hopefully this gives you the motivation to start trying to improve your condition. Since being in the sun, taking that time for myself. I’m less fatigued, I’m working on my health and diet and becoming less stiff, my legs and feet are far less painful and I feel like a different person.
Never put work or anything above you. Money or work isn’t what makes the world go round, your happiness does.
Thanks for reading, I hope this helps. This is just my journey and I hope to change it. I’ll leave you with this…
Remember it’s okay not to be okay and seek medical or emotional/ financial advice if needed. I always thought it was embarrassing, but It’s not, it’s brave. It’s brave Embracing yourself and trying to find ways to improve yourself and make yourself feel good!
Written by Confessionsof26YearOld.
