Reality check; we are all dying. Thats a given. We can hide from that fact nor are any of us superhuman able to avoid death and live on.
However, being diagnosed with a disease that presently has no cure, lacks research and isn't fully recognised by the health industry often feels like you are being handed your death certificate and then shoved in a corner, rotting. Just counting down the days.
No treatment known to work effectively, nor any help from the people we put our health in the hands of.
We are left to our own devices - researching, travelling for treatment, undergoing expensive treatments and tests in hope to seek some relief. The odds are often stacked again us but I think that is one of the beautiful things about the disease. The people that are affected my these diseases. We are fighters. Maybe that's why health professionals want to deem us as crazy.
1. It makes their job easier and focuses the blame on us, not them.
2. They fear our inner fight and motivation.
People often tell me and my Mum that we would make great nurses. We have to know our stuff though because nobody else is going to save us.
We have to fight for everything in life. People won't do anything off their own backs if they don't see any warning signs. That is why we have to raise our voices - shouting and screaming until we can't be silenced and changes have to occur.
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Not only do we have the headache of no direct and effective treatment that we have to accept and get our heads around but that our disease is neglected, ignored and made out to be a fraud and fake illness. That is the truly heart breaking fact.
Is it any wonder why people go on suffering for so long, so many years and many even going as far as ending their lives because they can't deal with the neglect, the crazy label and pain.
People don't only lose their bodies to the disease, but their minds, a truck load of money, often their homes, their lives, their hobbies, their careers, their dreams, friends and family plus much more.
When speaking to fellow sufferers many were like myself - driven, with big dreams and live goals. Some had successful businesses, were athletes, were at the top of their careers and were in line for big things. All having to push their goals aside and making fighting for a cure, praying for their own healing the new ultimate goal.
I haven't come across one sufferer who is selfish and out for themselves. We all fight for the overall goal of finding a cure to help everyone whilst in the process of healing ourselves.
Many doing endless charity work, writing to Parliament, taking on the doctors in court, vlogging- videoing their journey, blogging, writing books, using our hobbies and endless campaign work to raise awareness.
Truly inspiring people.
Special people that the world really need so why are they been thrown the most painful tasks?
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How do you accept the Russian Roulette game?
We are lucky we don't walk into a doctor's office and are told we only have six weeks to live. For that we are most grateful!
Though we aren't quite lucky enough to walk in with our symptoms get diagnosed and booked in on a treatment programme to succeed in helping us heal. Given the peace of mind that within a few weeks or months we will get ourselves and our lives back!
We are given options - yes we are often overwhelmed with options, like I am currently. Yes you may think, that's perfect. Lots of avenues to explore, options are always a good thing to have on your side. Yet when your options are extremely expensive, out of the area and sometimes abroad, these options are no longer plain and simple. The likely hood is that the first treatment you try may not be the right one for you. Leaving you to find the money for further treatments.
How the hell do you find the money?
This is the problem, it isn't the odd £100 which is still a lot to pay out at once but we are talking thousands. Thousands of pounds for a few weeks worth of treatment that may or may not work.
People sell their homes, use their pension money, ask family to help, sell their possessions and give up expenses ( having children, buying a dog etc) to pay the health bills. We shouldn't have to do this. There is no other options though. Insurance companies don't recognise our disease and so won't pay out, the NHS don't recognise our condition so won't support or offer us treatment ( often trying to sue the help we are recieving ), health professionals fear of losing their licenses for treating us. So sourcing treatments and tests that are often designed for other diseases cancer, Parkinson's , MS and so on.
Rare treatments that are expensive because of the struggle to access them and make them.
Is it any wonder we harbour so my guilt. Guilt over the strain we put on our most loved ones. Not just with our health but financially.
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'Things will get worse before they get better.'
This point I accept and am willing to ride out the heightened pain levels and flare ups.
When you have to go through this again and again, time after time because you are trying different treatments due to the failure of the last you that you question, 'Where is my relief?'
We are already in so much pain - it's daunting knowing we will have more to live with.
We hate it..
Though like discussed above we are all so driven that we refuse to surrender.
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Common understanding.
Bless them, friends, family and loved ones try their best to be there for you, offer you the support and understand the best they can.
My Nana even says how she never gets round to reading her she kindle and story books anymore because she is always reading articles and my blog on Lyme in her free time. Bless her.
All sufferers are truly grateful for you all taking an interest, offering support, doing your own research, being open to listening and willingness to understand.
At first many of you felt your support and friendship was enough and it is! From traveling further down this road though I am filled with joy and gratitude to see people going beyond their duties. Willing to travel to be there for you, asking questions, learning more about the disease, educating themselves. This is great.
We are forever grateful - remember knowledge is power. This also shows how it's not an individual fight, you aren't alone we have an army. Who like ourselves, fight and pray everyday for a cure and help.
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Life.
This is far from the life I pictured for myself. Never did imagine this path.
I was going to have a career in swimming, compete at London 2012, win medals and be remembered for them.
Be married in my mid-20s, travelling and eventually beginning a family.
Now.
Now look.
My path - my life plan never really got off the ground.
This guilt, upset, grief and disappointment I live & battle with everyday.
I try and see it's failure as a blessing in disguise.
I was lucky enough to have amazing successes in swimming, met inspiring people, made life long friends and gained personality traits that have shaped the person I am today.
Following my plan however would have prevented me from experiencing everything else I cherish so much and mistakes in which I have learnt so much from.
I have learnt more than in all my school years about things that really help build our souls and ourselves as people.
I have felt great pain, battled through the toughest days, gained knowledge of which I never intended to learn, found new hobbies I adore, faced grim decisions, shed an ocean's worth of tears, learnt the art of the brave face, growth in strength, met inspiring people and learnt who my true friends are.
A textbook can't teach me those wonderful things.
I have been lucky and am truly grateful.
My failures as I saw them in live have driven me to find hope, success and postivitity in anything thrown at me.
We can't plan. Nobody knows what is round the corner.
Nobody is superhuman and being the fittest person alive won't protect you from deadly diseases.
We must live as much of life as we can. Practising the art of gratitude and surrounding ourself with happiness.
Life is a mixture of successes and mistakes.
Interesting stories do not consist of straight and narrow roads.
Roll with bumps and work round the corners. They shape you and bring charm, uniqueness to your journey.
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Living.
When we discussed above about the fact we are all dying, having a disease in which you know is killing you but you don't know how or from what you will eventually die from you just know the Lyme will have been the culprit. You are left in the fog of never knowing how long you have or if your symptoms will worsen or get better.
Without the symptoms this thought is daily torture.
My Mum often gets mad at me for over-doing it. Seeing too many people, going out too much, committing to too many events and tiring myself out. Causing excess fatigue, heightened symptoms and knocking me out for days on end.
I find it hard ..
I find it hard to come to terms and accepting the concept of having to rest and spend some days doing very little.
I don't know how long I have left - time waits for nobody. I don't know how long I will still be able to walk, remember memories, stand up, talk, function as well as I do today etc. I know, I know people will say don't think like that but you can't help it and I think it's maturity accepting these facts and being better mentally prepared for them if these issues occur or when they occur.
I don't want to be wasting time! Wasting time, missing out, siting at home, 'resting' .
You can't replay or go back in time to experience events you missed or do more with your day.
Maybe one of my fears is dying and feeling like I wasted time, didn't live enough even with my limitations. Not everyone gets the gift of life. I can't forgive myself for simply sitting here, clock watching and waiting for the sun to shine. That is of zero benefit to anyone.
I want to make memories to cherish, laugh with the people I love the most, make a difference to the world, help people and learn from cultures and people in general.
This stress is physical as you push yourself and your body but extremely mentally exhausting too ! You want to live like a 23 year old and the pressure to be as normal as possible is unexplainable.
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Pain.
Experiencing the endless pain, the trap of no relief and never knowing when the pain will fade away. Is a mental and physical hell.
Your body changes and your personality is tested. Frustration makes you short fused and you feel like you begin to lose yourself as a person.
You cling on to your past self. Often leading to further pain, hurt and sadness.
How can you enjoy life to the full when you are plagued by pain, barriers are forever in your way.
You have to plan, adapt, be flexible and organise everything! You can't go with the flow, you can't pop a pill and make everything better you can do what you want to.
What 23 year old wants to live such a caged life.
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Years.
How many years - how many years do we have? How much time does the suffering go on for?
I said to a friend just last night that I have to live as much as I can. Accepting that somedays may be happier and more full than others. Some days may be hard, painful and upsetting.
I can only live as much as I can, be grateful for everything and cherish all the treasures I am lucky to have.
Not knowing how many years we have can be a blessing and a torturous fact.
A blessing because who wants to live in fear and counting down their days.
Torturous because we have no idea when the fighting can stop, when the pain will disappear, when we will be free, or are able to treasure and use our final days to the most.
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The days of our lives.
Different symptoms daily, along with different plans and commitments are a living nightmare.
I open in my eyes in the morning not knowing if I can move or not. I panic about what I am going to wear and the energy to get dressed.
Some days I can't manage tights or certain materials. They itch and cause me great discomfort.
The energy - if I know I need to go to the toilet I will get up and half get changed ( whilst I am up!) and get back into bed to try and reduce stress.
Once up I am ok, but that hang over feeling kicks in. Sickness, headaches and dizziness.
You have to try and make changes to your life to work with your symptoms so you can still do you daily activities.
We must allow extra time for tasks - your mind isn't as sharp and your joints hate fast movements.
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Adapting.
Coming to terms with not being the fit young person, full of live, always on go is hard.
You now can no longer walk the stairs without pain. Walk far at all or stand up for too long.
You can't lift nor do you have the strength to bend over and move things.
I use steam bags to steam my veggies to reduce washing up.
I set the dishwasher off half empty because I can't face unloading and lifting to many pans. I also have to unload it at night before bed because in the morning I don't have the strength.
I have to fill my water in my fridge up at night because again I can't lift the bottle in the morning.
Med's have to be organised and laid out long before needing to take them to remind me and ensure I have all the right ones at the right time.
I have to have a cup of ginger or green tea to settle my stomach in a morning.
Relying on people for lifts. Not being able to drive really does cause me to be restricted.
I have to set my clothes out the night before to reduce morning stress.
I have had to buy lose clothes so my skin isn't irritated.
I have had to change my shampoo, conditioners and cleaning products.
Long traffic jams with the toxins give me sore throats so always have to carry throat spray.
Taking my own food to restaurants and ringing in advance.
Pacing - I can't hack events longer than 3 hours.
I have to have help with my shopping.
House is going to be adapted to my needs.
Have to work off a routine to remember medications.
I carry my sunglasses always - light sensitivity can come on at any point.
Once sat down I have to ensure I have everything I need because getting up causes pain!
Changing my bedding and getting extra soft pillows so the duvet is lighter to lift and the pillows support my joints.
Constantly burning candles as my sense of smell is so bad and I worry about my house smelling horrible or of spices from all my foods.
Taking baths over showers. Showers zap me.
Just to name a few.
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Missing out.
Missing out on events, cancelling and leaving early is mentally upsetting. Your friends begin to leave you out and forget you because they know you aren't well enough / able to do the activities they want to do.
I don't want their lives to stop or prevent them from doing any amazing experiences that surround us. But we have to sit back and watch bedridden. People will tell you 'don't worry - you'll be able to do that soon, just rest for now.' But never again will I be 23, never again will this moment play out as it is now, and when will I reach this time when I can take part - not knowing when leads you to get down about having to wait. Waiting completely in the dark and unknown.
Nobody my age wants to just go for coffee or one drink. What's exciting about that?
I completely understand that. I want them all to go out clubbing, biking, hiking, drinking, to concerts etc. Your heart just takes a battering because you want to be a part of these pleasures - pleasures of life and be able to see your support system you need so much to keep you sane and motivated.
But you feel isolated, lonely and a burden. Which mentally is hard to come to terms with.
We miss out on dressing in beautiful clothes, eating delicious foods, smelling gorgeous smells and tasting yummy foods properly, travelling. We clinge on to everything trying to train ourselves to be grateful for every little thing. And that life isn't defined by the points above but by love, kindness, nature and so on. You still have oxygen in our lungs and that we must appreciate.
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Explaining.
'You don't look unwell?'
'You look better today?'
'How are you?'
'How are you feeling?'
'What diet are you on?'
'What treatment course is next?'
'Are you doing enough!?'
'I read about this treatment - have you seen it?'
'What symptoms do you have?'
You never ever want to be Miss Negative and your symptom list is longer than a weekly shopping list . You really don't want to get into it. You have made it out or made the time to see people etc. I want to be there for them, hear their stories and life. To prove to myself there is still a life worth fighting for.
I also don't want to get into my list because many don't understand and I don't expect them to. I wouldn't wish the pain on them! So really I don't want them to know how I feel.
Everyday is different and yes I may look a little brighter which is amazing. But most of the time it's because we have taken hours crying behind closed doors and trying to cover our sadness with make up so you don't question or see our pain.
Our symptoms change we know you get fed up and bored of this fact so we prefer to keep quiet.
Never question our fight. We are doing all we can. Trying new treatments, travelling across the country for advice, looking and researching aboard clinics. Asking if we are doing enough when we are exhausted by the pain and drained from treatments is hard. You begin blaming yourself for looking as if you aren't doing enough but have no idea 💡 what more you can do/take. Treatments are intense and aren't simple. They take a lot of mental, physical and emotional strength. You are zapped in all ways. You experience horrible flare ups not knowing if in the end it will help or set you back. The all round impact is tough.
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Loving you & your body.
How can you be friends with something that is trying to destroy and kill you?
You have to dig deep. Your body was once your friend. Bouncing back and on your side of the battlefield. Like your mind it has been changed to see things differently. That the nasties are the angels and the hero's not your own body's army. Their weapons have been taken and are being used against them.
Like prisoners of war. They are striped of their weapons and aids in which they need to fight. Before being left locked up, trapped with no where to go, no way of fighting. Their weapons used on them!
It's not that your body doesn't love you even though it feels like it does hates you. It causes pain when it's screaming out for help and it too lives in sadness knowing it's not serving you as it should be doing. This we know is the case because as soon as we give the body and it's immune system extra weapons it wakes up immediately and fearlessly gets out there, fighting hard despite the dangers of being taken down. It's there for you!
Remember you can't change your body- it's you! You should be proud of it. Like your parents are proud of you. They accept your failures and mistakes - they don't love you any less for them. You shouldn't love your body any less or punish it either. Like your parents would, they encourage you. They teach you the art of growing from the set backs and again that's what you need to do for your body. Allow it to rest and recovery then give it the weapons to try again.
When you look in the mirror, disgusted by the ill face staring back, zapped and drained of life you feel ugly and ashamed. You should be on top form, loving life. Not look like the walking dead. Look deeper- look beyond the surface. The deeper you look the more you will see the flame of inspiration burning within your soul. The flame hot with motivation and love.
Inner beauty is worth so much more and that is what we have to appreciate and practise to see more of.
The people who matter most to use will also see your inner beauty over your outer beauty. They are the people you want in your life. Not judgemental, shallow people who don't and don't care to understand your pain and struggles.
It's hard as getting ready to go out can cause a lot of upset and anxiety. Never feeling comfortable in your own skin. Again mentally and physically it's tough. Just seeing old pictures and wishing you could snap back.
Your outer shell 🐚 you may feel is ugly but always keep a kind heart and know that makes you truly beauty.
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Conclusion.
We are all dying - but make sure that today isn't your day.
Focus on the things that make you happiest in life; friends, family, hobbies and work. Life is too short to do anything that makes you unhappy.
Practise as much gratitude that you can and pray that one day our voices will be heard, a cure finally found and available.
Even if it was too late for me, if we save furture generations then we can die at peace.
Nobody is superhuman - we can play by the rules but it won't save us.
Nothing can ultimately save us. So get on with appreciating everything!
If you are fit and healthy do everything! Take on every opportunity.
If you are chronically ill and/ or suffering with a disease which is yet to find a cure then explore what makes you feel happier and a little more complete. Celebrate the victory's, big and small. Spend your time with people who raise you up and fight alongside you.
'Life is like a box of chocolates, you never know what you are going to get.'
We must keep fighting warriors.
I felt this post would raise important points. When currently going through a flare up it inspires me to really raise awareness on the struggles I face and the journey that I am currently on.
Personal stories and accounts are more engaging and allow you all to understand a lot better. I hope it helps you place yourselves in our shoes and think about what it would be like to suffer from a disease without a cure. Alongside the pain, symptoms, strains- mentally and physically and with no real end in sight. It's not a joke or a bit of a laugh it's soul destroying.
We are doing the best we can.
Let me know if you found this post insight, touching and/or useful.
Enjoy a blessed weekend.
S
Xoxo
Love always.
