The “i” in illness

This is not my typical type of post detailing the latest natural skin care product that is currently tickling my fancy or the shiny rose gold piece of jewellery that has caught my eye. Although I absolutely love all things beauty and fashion related and have been blessed to receive such wonderful  products from people and companies, these things are merely skin deep. Being honest the majority of the time whilst being ill, I do not have the energy to get out of bed let alone apply lotions and potions to my skin. In an ideal world where I felt healthy, energised and disease free, I would love nothing more than to have my hair and makeup looking amazing and to wear my beautiful clothes. The reality at least at the moment is something quite different. My life for now mainly exists in the horizontal position whilst wearing pyjamas.

This is something much deeper than anything I have posted about before. This is the true inner workings of me. My true innermost thoughts and feelings. Call it “getting inside my head” so to speak. I am just a person like a lot of you out there that is currently battling illness. The battle does not simply refer to the disease itself but the many complexities it brings to not only your life but to the those around you. I like to think of it as an earthquake where the epicentre is your disease in your body and the shock waves it sends out hits and impacts all the closest people in your life first. Then it radiates out to hit your career, hobbies and interests etc. So why have I veered away (at least temporarily) from my typical product reviews for this style of post? Well as some of you who follow me on social media, specifically on the Facebook page, I sometimes post little updates on how I am feeling. I now feel ready to venture into this in some more detail with the hope of it resonating with some more of you and creating a better understanding of who I am, what I am going through and what makes me me.

My back story for those of you who may not know, is that I have been very ill for a number of years and have attended many a doctor to try find out what exactly was going on. After being met with numerous tests, shrugs and even head scratching, I finally got a preliminary diagnosis in November 2015 and a more definitive diagnosis in July 2016. I have Lyme disease caused by a bacterial infection called Borrelia Burgdorferi along with a co-infection caused by Chlamydophila Pneumoniae (it is not the sexy type as I like to call it). These infections have been in my body a long time and are quite difficult to treat. It is only recently, in the past few years that they have become active in my body. These have previously been lying dormant for many years after the initial infection. They are sneaky, complex bacteria that invade deep crevices within the body and spread around quite cleverly undetected by the immune system. Although incredibly complex they are also fascinating, well I think so anyway. To be able to invade a host and spread around like they do is quite astounding. It has definitely got the interest of my inner microbiologist. I was always fascinated whilst studying microbiology, by the various types of bacterial, viral and fungal microorganisms that exist and their impact on the human body. I never thought that one day I would be a life-sized petri dish filled with some of these microorganisms.

I must clarify, I am writing this not to ask for any sympathy or pity. I am writing this to hopefully create some understanding. A view-point into one particular persons journey with illness. This is my story no one else’s but some things I touch on may sound very familiar to some of you. This is not only for people who are currently ill but for those of you who are possibly supporting a loved one through illness or want to learn a bit more about myself or the impact of illness on a person’s life. I am very much aware that no two people will experience the same disease or same set of symptoms. No two people’s bodies are the same and medication etc. can affect people in different ways. I am also aware that illness can manifest both physically and psychologically. Both forms as valid as the next. You may not have a limb falling off and you may look “normal” on the outside but still be hurting and suffering on the inside. Sometimes people are very quick to judge what can be physically seen on the surface. For all those type of people I simply ask one thing, open your eyes, I mean really open them. Learn to look below the surface. Learn to look into a person’s eyes as it is the one area illness always reaches and cannot be easily hidden.

Physical illness not only affects the inner workings of the body but also wreaks havoc with your mental health. It basically can turn your body and all its many systems completely up-side-down. Emotions can run high, you may feel mentally foggy, may not be able to eat or spend the entire day sleeping or vomiting. Your hair may thin, you may get rashes everywhere, your libido may appear completely non-existent and you may feel anxious and low. These symptoms can affect us all so do not feel alone if you too are experiencing them. I would definitely contact your GP and/or medical team if you have any concerns and no you are not being a nuisance. They are there to offer help, advice and support in a confidential manner.

Illness may cause physical pain but psychological pain can hurt just as much. The majority of the time I am positive, however, like any human I experience negative emotions. I try to remain as real as possible by saying things exactly as it is. I may also come across as “put together” and have been referred to as being “strong” and “inspirational” but I can honestly tell you there are times, very often in fact where I feel completely and utterly overwhelmed. There is also nothing amazing or special about me as a person. I am just like every one of you. When I hear the word inspirational I think of a Nobel prize-winning individual or people high up in their field making a real difference to the world and people’s lives, not me for I am merely a normal, everyday person. Anyone who goes through any aspect of physical or mental illness are the strongest people out there. To be able to open your eyes everyday when you feel like you do takes incredible strength, so please never underestimate the true power you possess inside. I too can feel guilty, feel upset and mourn my old life. I even feel extremely sorry for myself at times and question why this has happened to me. Unfortunately, like many of you going through illness, there is simply no answer as to why and how we got sick. The very aspect of having absolutely no control over it is frightening. It not only affects your life, but as I like to call it your inner circle of people’s lives too. These people are those who I would consider as being your support network, your closest friends and family. The people who stand by, love and support you through good times and bad. The people who you had to cancel on at the last-minute or miss out on celebrating with or simply the people who sit in with you every weekend and try everything to cheer you up. You know who these people are.

Having to depend on others for even simple mundane tasks can be quite challenging and can cause a serious knock to your independence and overall confidence. Still to this day, one of the hardest things that I found particularly challenging was having to ask my husband to help wash and bathe me. To admit that you cannot wash, feed or dress yourself is one of the most soul-destroying things that can happen to a person. Simple human tasks that were once undertaken with ease can easily become completely unobtainable and unachievable when you are ill. It is crazy how some of these things can be taken for granted when we are in the whole of our health. I am learning now that it is ok to ask for help. Does it still crush me having to ask? Yes it does but in order for us to progress sometimes we have to take a few steps back. Does it make me any less of a person? No it certainly does not. My life is as important as anybody else. It is easy to tell people or be told that illness does not define you. This is complete and utter rubbish, of course it does, every aspect of your life is affected by your illness whether you would like to admit it or not. I think the way to phrase it would be, illness will impact every aspect of your life when you are going through and recovering from it but the day will come when that control slowly returns back to you. You will get that bit stronger, be able to walk that bit further, your confidence and independence will slowly return and life will be pleasant again. Right now I am very much in the I am unable to function category. The mixture of medications and the active infections are really taking their toll on me both physically and mentally. I feel guilty every day for having my husband, friends and family experience this too. It not only sucks that your life is impacted by it but it impacting the lives of people you love is upsetting. Illness is tough and I try desperately to remain positive and tell myself that everything happens for a reason but sometimes I just do not believe that  but I will continue regardless to tell myself that each and everyday.

I always had an interest in helping people who were ill or in pain. It always upset me even as a child to see somebody cry or see one of my classmates fall and hurt themselves whilst playing in the school yard. From a young age all I wanted to do was help these people, look after them and take their pain away. I remember quite vividly sitting my mum down after she cut her finger. I instinctively went to the first aid box to retrieve a disinfectant wipe and plaster. After cleaning her wound with the wipe i then placed a plaster on her finger. I then got her a glass of water, felt her forehead for a temperature and told her everything was going to be ok. I think I had learnt all of this medical wisdom from years of watching the tv programmes casualty and 999. I suppose that too is responsible for why I went on to study science in university. I was always fascinated by the human body. I would have loved to have been a doctor but a mixture of not getting the points in my leaving certificate and being someone who would spend the entire day crying because I could not fix or make someone better led to me discovering that maybe it was not meant for me. Still remaining extremely passionate about helping people, I decided to work behind the scenes instead in diagnostics.

Illness can hit anybody at any age and at any stage in their life. It does not discriminate. It can not simply be put on hold to deal with at a later time. I suppose it is the one thing that really makes you stop in your tracks, makes you evaluate your life and makes you look at everything differently. Well it definitely makes you question a lot of things anyway. I thought that I was completely stuck, remaining stationary and not growing as a person, but looking back over the past few years I can see that this was not the case. I can now see just how far I have come and how much I have grown as a person. I have more of an understanding of the true beauty in this world, the importance of the little things in life and most importantly how to live in the moment. I have also experienced such kindness, compassion and encouragement from people as a result of setting up my blog. It is true to never underestimate the kindness of strangers. I know deep down I have the desire and passion to make this into something much bigger and to reach and empower more people. Hopefully my own personal journey and everything I am learning along the way will help create a greater understanding of what people who are suffering from illness want and need. I hope that I can help give back to those people who really need their voices heard. Right now at this very moment, I am a long way off achieving this goal but I believe one day I will get there. I can not help but feel guilty sometimes that I can not blog and review products as much as I would like. I often feel I am letting people down after they have been so kind to me. All I want for them to understand is that I have not forgotten about them and that I will get around to trying out and reviewing their products. I have just been hit with a fair few obstacles over the past few months with regards my health. The very little energy I do possess is invested into fighting this disease. I would absolutely love to be able to give my all to the blog but right now beating this illness and getting better takes priority. After all how can I give my best if I am not feeling the best inside. For others to benefit from me I need to be in tip-top condition.

For those of you who regularly follow me or who are new to the blog, I thank you wholeheartedly and welcome you to this supportive and non judgmental place. For those of you who are ill or suffering please do not feel afraid to reach out. I would never want you to feel pressurised into commenting on the various social media platforms etc. but if you wanted to ask any questions please don’t hesitate to PM me. Only you will know if and when you are able to partake in discussions or comment publicly on a post. To all of you, friends and family members who are supporting somebody who is ill, the only advice I can offer you is to take things on a day by day basis. Sometimes simply placing a blanket over us while we doze on the couch or keeping the overall noise down in the house is greatly appreciated and exactly what we need. We notice everything you do for us and are extremely grateful and appreciative for it. I can guarantee if the shoe was on the other foot we would do the exact same for you. We understand you get frustrated but it is upsetting when you inadvertently take it out on us even though you may not be aware of the fact that you are. We are frustrated and emotional about it too. Make sure to always have an outlet to escape to and time for yourself. The last thing we want is your physical or mental health suffering. Please do not feel afraid to ask for help or advice and never feel ashamed that you too may need some support. Remember that a lot of things you research online are inaccurate. If you are doing research on a specific illness or disease make sure to read the proper literature i.e. pubmed (medically and scientifically accepted papers/databases) etc. but to also talk to the medical professionals and proper charities specialising in that particular illness. Misinformation is as bad as no information. The Internet and various support forums, although set up in good faith can sometimes be infiltrated with inaccuracies both from invalid and unregulated research and people’s obscured views and opinions (this can be from the general public and even some Medical/Scientific professionals). I also strongly advise to never purchase any medications or treatments online no matter who or what endorse them. There never is a quick cure unfortunately and competent regulations/claims rarely exist amongst these. You have a right to question your diagnosis and treatment and ask for second opinions etc. but make sure it is from proper accredited, regulated and certified people. If you are ever in any doubt (in Ireland) about any medication, treatment or professional do not be afraid to contact the Irish Medicines Board and ask their advice.

Finally for all of you feeling like crap and going though a tough period right now, know that you are not alone and that you do not need to suffer in silence. Is it right that you are suffering? No. You have the right to reach out and ask for help. Sometimes if things are not straight forward you may have to fight for your voice to be heard and fight for a diagnosis. Just remember you have a voice, a voice that does deserve to be heard. You have a right to treatment, a right to fight and overcome your illness and a right to live a happy and healthy life. Things may feel impossible at the moment and I am all too familiar with feeling like that but this is what it is right now at this very moment in time. This is not forever. Even though you may feel that you have forgotten what happiness feels like or feel like you may never experience it again. I am here to tell you it does still exist and will come back to you in time. From someone who has been on the brink of life many a time and has wanted and wished for all the pain to go away, trust me when I say I regret nothing. It has made me the person I am today and I am happy with that person. I know I am a good person and so are you. I know happiness and health will come back to me as it will to you too. It may take some time but we will experience life in all its glory again. This will pass but you may need the help and support of medical professionals and your friends and family to get you through this. It is ok to lean on others for support. This will pass too and you will feel independent again. You will be able to live a happy, healthy and fulfilled life. One that we all deserve to live and most of all remember that even through illness, beauty remains.

image

All opinions expressed are my own. If in any doubt please contact your GP or Medical team.

17 Comments

  1. miriam ahern
    1st September 2016 / 9:59 AM

    thank you Avril for very informative article I would like to p m you as I had pneumonia and have been ill for six years Many thanks Miriam Ahern

    • apalershadeofbeauty
      6th September 2016 / 12:44 AM

      Hey Miriam thank you so much for checking out my post. It really means a lot to me. I’m sorry to hear you too have been battling illness. It really can be so tough and I hope by me sharing my personal story it might help somebody in some little way (of course your more than welcome to PM me) X

  2. Niamh Maher
    30th August 2016 / 1:04 PM

    Thank you so much for this amazing post April! I was nearly in tears yesterday reading it, it was like you just put some of my own thoughts into words (far more beautifully than I ever could).

    It can be so difficult at times seeing how much our illness impacts on those around us and the guilt I feel every time I reply to an invite with ‘I’d love to but I’ll have to see how my body is behaving on the day’. I’m usually very optimistic and make light of my illness but there are days when it just gets on top of you. It’s just so refreshing an lovely to see someone writing from the same perspective.

    Thanks again Avril! I hope you’re starting to feel better soon and until then, there’s a community of ‘spoonies’ here for you xxx

    • Niamh Maher
      30th August 2016 / 4:29 PM

      I just saw my phone changed your name to April at the start of my comment Oh autocorrect

      • apalershadeofbeauty
        6th September 2016 / 12:45 AM

        That’s it your banned lol I kid, I kid. Don’t be silly I get you. You were close afterall Avril is the French for April

    • apalershadeofbeauty
      6th September 2016 / 12:51 AM

      Niamh thank you so much. You nearly had me in tears too. That was such a beautiful thing to say. The reason I am here baring my soul so to speak, is to give everyone going through illness a voice. Illness is never straightforward and every day can bring new challenges even to the strongest of people. I think everyone going through illness is incredibly strong even if they don’t feel it themselves. The guilt is very much real and tiredness, hormones you name it can really bring out the irrational thinking at times. Thank you for commenting. It really boosted my confidence and it’s always nice to hear that people can relate to what you write. X

    • apalershadeofbeauty
      6th September 2016 / 12:53 AM

      I love the word spoonies. Even though I know the true meaning of it i.e. Balancing your energy with the number of spoons you have on a daily basis. I always imagine a place when I hear spoonies that sick people go to give another sick person a cuddle to make them feel better.

  3. Maura Cahill Viera
    30th August 2016 / 3:31 AM

    I give you so much credit to put all your emotions out there. It takes a lot of courage to do that and I think it means so much to others who are ill or caregivers to hear the affirmation of their own emotions. Keep it up Avril your strength and courage will get you through this awful double infection. Maura

    • apalershadeofbeauty
      6th September 2016 / 12:56 AM

      Thank you so much Maura for your kind words. That’s exactly what I am aiming to do when I wrote these pieces. Illness is so challenging for everyone involved. I think by sharing your own personal story can really resonate with others going through it. At least I think it does anyway. X

  4. Anna
    29th August 2016 / 12:48 PM

    At least now you know what the cause of your illness is and you can work on getting better, although it will take time. I agree that you really have to take care of your mental health or it will spiral out of control. When something as simple as taking a shower exhausts you, or not being able to dress yourself, it can really bring you down.
    There is nothing wrong with asking for help or admitting you can’t do it by yourself. Even though we get frustrated, it’s important to realise and accept that this is how it is, for now. We have to make the best of our situation, look for the positives in our lives and know that one day we will be back in control of our bodies and lives again, even it it will not be the same as before.
    I’m still looking for answers to my health problems (or hidden illness), I look fine on the outside, but on the inside, is another thing entirely.

    • apalershadeofbeauty
      29th August 2016 / 2:06 PM

      I couldn’t agree more Anna. Thank you so much for taking the time to read and comment on my post. I know how limited your energy must be so I really do appreciate it. I’m so sorry to hear you are suffering too. I really hope you can get some answers and a treatment plan set up. Use that beautiful voice to keep fighting for answers. It took me three years but now I finally have an answer. There is always a root cause as to why you are ill. It’s just a matter of finding the right specialist to dig and dig. Sending you lots of love. Be kind to yourself and please keep in touch. X

  5. Grainne O Meara
    29th August 2016 / 10:47 AM

    Gosh you write so eloquently. I hope that some publisher snaps you up. A Paler Shade Of Beauty would make an excellent read in book form.
    Wise, heartfelt words. Thank you for your honesty. Sending hugs & every positive thought.

    • apalershadeofbeauty
      29th August 2016 / 2:15 PM

      Aww Grainne your too kind. Sometimes it just flows and I need to get everything I’m feeling out of my head and written down. I know it may not be everyone’s cup of tea but I’m there to give the people that genuinely matter a voice. A book? lol funny enough I said to myself when I have this disease beaten etc that I would love to write a book about it. Well the journey through it and how my blog came to be and how it hopefully evolves into something. Thank you so much for your kind words. You will have me in tears here, happy tears of course. Sending you lots of love and positivity too. X

  6. Jill
    29th August 2016 / 8:56 AM

    Your words are beautiful and touch my soul x x

    • apalershadeofbeauty
      29th August 2016 / 2:19 PM

      Aww Jill I’m actually in tears reading all of the beautiful comments to my post. Everything I wrote came from the heart so for someone to say it touched their soul completely blows my mind. Like I said I’m there to share my story and give people who are suffering in silence a voice. Hopefully it will encourage them to write down or speak about what they are going through and how they are feeling. Thank you so much for your kind words. It means the world to me X

  7. 29th August 2016 / 8:33 AM

    Great post Avril. Perfectly summed up! Hope you feel better soon. Hang in there!

    • apalershadeofbeauty
      29th August 2016 / 2:24 PM

      Thank you so much Bridget. It all came flowing out last night and I had to write it all down. I know I will get there. I just have the days and weeks where everything gets on top of me but I have to say it does help to write it all down. If by sharing these inner thoughts helps or encourages someone in some way then it is worth it. X

I would love to hear what you think by commenting below.