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Alexia's story

10th November 2018

Thirty-six year old Alexia, from Darley in North Yorkshire, was rushed into hospital at the beginning of October and diagnosed with severe bacterial meningitis and severe secondary acute reactive arthritis

Alexia's story

Here she tells us how she feels fortunate to be able to say she has survived her ordeal and how she has been able to come home to recover further with the support of her amazing family.

"As a specialist nurse in critical care, working in infection prevention and control, Alexia is sharing her experience as a patient and wants to raise awareness to health care workers as well as members of the public.

“I am so lucky and thankful to be alive.

“I can honestly say it was a most terrifying ordeal to go through and my brain is still a boggled and emotional mess from it all.

“I could not have got through this experience alone and I am so blessed and thankful to have the love and support of my loving family and friends.

“My family responded immediately and were with me all day and into the night. My mum was ill and could not be there to begin with but my amazing rock of an auntie Amelia, who fought for me and was so strong, became my voice when I no longer had the strength to fight when I wasn’t being heard. I will always be eternally grateful to her for this️. There are lots of blank gaps for me when I was too out of it to recall what happened. Thanks again to my family for keeping a log of events so that I can start to piece together this mind puzzle.

Excruciatingly painful

“The acute reactive arthritis was excruciatingly painful and unbearable at times. For some reason it affected my right side of the body more than my left and for some time left me unable to move my right side at all. I will always be extremely grateful and thankful to my amazing rheumatologist who was able to reduce the pain and inflammation to my knee considerably and made the pain tolerable. This was carried out with the assistance of my gorgeous Popsy, aka Dr Bandelis, and my wonderful fiancé Graham, ️who bravely assisted the doctor during the procedures to aspirate all the fluid that built up there.

“I’ve still a long road to recovery from the effects of the bacterial meningitis. My concentration and memory are a bit jumbled at times. I am still sensitive to lights, sounds and too much noise isn’t good for me. I have intermittent blurred vision, my brain feels jumbled and I have little energy. I have a constant ringing noise in my ears and the doctors don’t know if this will or won’t be permanent.

“I’m not yet fully mobile, my right leg and hand need to start doing what the rest of my body is doing but I am taking steps again which is wonderful. Ear defenders and sunglasses are my current best friends!

Experience has taught me so much

“This experience has taught me so much. Life is indeed very short and can be changed or taken away from you in an instant. Waking up in the most excruciating pain and unable to move one side of my body was so frightening. Never take anything for granted, enjoy every moment and be thankful for every second.

“Don’t sweat the small stuff, it’s not important. Love each other and in a world where we can literally be anything… be always kind.

“Forgive yourself and others for any mistakes you have made. Apologise quickly, don’t bear grudges and enjoy quality time with family and friends undisturbed by the digital world.

“Please don’t think you have all the time in the world to do everything. You never know if you’ll get another chance to say or do what is on your mind. Cut out anything toxic in your life and distance yourself from negativity, your mind and body does not need this.

“Resolve issues quickly and ‘nip it in the bud’ (my amazing Auntie Lorna’s famous words). When you say goodbyes, say it as though you may not get another chance to do this.

The best medicine

“Not being able to see my two gorgeous stepchildren for three weeks was so hard. The day I was allowed off the unit to use a quiet room to see them was honestly the best medicine I could receive. Love and laughter truly helps.

“They say knowledge is power, which is definitely true. Knowledge can also be deeply frightening. As a nurse I know so much about meningitis and the seriousness of bacterial meningitis. It was extremely hard to be a patient knowing all I did. At times I wished I didn’t have this knowledge, but I know it helped me to fight for myself because I knew and voiced what my diagnosis may be and what treatment I needed.

“As a specialist nurse, being the patient in this situation, I cannot stress the importance of maintaining a patient’s dignity. It doesn’t matter who you are, always knock and check before entering a patient’s room. Introduce yourself, tell them your role and why you are there.

“I could not see at times and it was terrifying to have unknown people come into my room without their informing me who they were and what they were there for. It makes a world of difference to the patient to have their dignity respected and maintained. Losing your independence and relying on others to complete simple daily activities, including maintaining my own personal hygiene or pressure areas, should not result in a loss of dignity. Urinary catheters, whilst essential at times, are not comfortable at all. Please take care of a patient’s catheter when moving it or the patient.

“Thrombophlebitis is extremely painful. I’ve got war wounds from losing my IV access regularly and the bruising and swelling to the veins from the drugs is painful. When your patient is unable to see things for themselves, give lots of reassurance and explain all the procedures you are carrying out. Ensure your patient has access at all times to their call bell. I know from my own experience that it’s absolutely terrifying when a patient needs help and cannot move to find the call bell.

Be patient focused

“It’s important to always be patient focused.

“Please, please, please always talk to the patient in the bed. I am lucky I was raised a strong, assertive woman and I was able to voice my concerns and needs to the staff.

“Please, please, please listen to your patients. They know their body best. If you lack compassion, don’t work in healthcare.

“After a harrowing and traumatising experience on the initial area I was admitted to, I could not have been more grateful and thankful for the support of my amazing family and all those who fought for me and made sure I was heard.

Amazing specialist team

“I am deeply grateful to all the hardworking staff who then took over my care on the Infectious Diseases Unit. They are an amazing specialist team of people and without their input, dedication and efforts, I wouldn’t be here today. Words cannot express the deep and eternal gratitude I feel toward this team. Despite all the obstacles they faced from regular low staffing levels, extremely sick patients requiring a lot of care and input, they always remained professional, compassionate and caring and there are several shining stars who went that extra mile for me and totally individualised my care needs, for which I am truly thankful.

“From the catering and domestic staff, who knew to enter and leave quietly through the extremely loud door, providing me with my breakfast yogurt from the patient fridge along with a peppermint tea, as they knew I wasn’t able to tolerate toasts and cereals and normal tea initially.

“The clinical support workers and student nurses, who assisted me with my hygiene needs and knowing what was important to me and helping me feel like me again. The nurses and doctors on the ward were all amazing and gave me the reassurance I needed so much so, that I could actually switch off as a nurse and be the patient.

Caring and insightful

“The theatre staff were sensitive and looked after me and also my brother Chris, who came down with me before I went in for my procedure. They supported me in such a caring and insightful way and kept me as pain free and sedated as was necessary. It was deeply scary to not be able to see, to not tolerate lights and sound, but through it I do remember their gentle and calm voices.

“The orthotics team was amazing and flexible in their approach, because they knew after a first traumatic journey to their department that I was extremely sensitive to sound and light and that they would be best to visit me on my unit in my side room. The splints they provided me with helped me recover my foot drop, reduce the pain in my joints and got me upright on my feet using a knee brace. The teamwork and clear communication between the orthotics, occupational therapy and the physio team ensured I was at last more mobile and could reassert my independence for some tasks.

“A special thank you to my amazing little sister (in-law) Beth who, when no one else could touch me when I was at my worst due to the pain and rigours was able to help me find calm and relieve my pains through applying Reiki therapy. I fully recommend this to everyone.

“Another special thank you to my big sis Litsa, who travelled to come and see me with the queen (my gorgeous Nouna, godmother in Greek), and my beautiful niece Gabriella, who did some beauty treatments, which were heavenly and made me human again.

Listen to your body

“Always, always, always listen to your body. If something doesn’t feel right, trust your instincts and get checked out. I didn’t have all the typical signs of meningitis and felt absolutely fit and well until the day I fell ill with it. It honestly can come out of the blue.

“So many thank yous, too many to mention them all! I am so blessed and lucky to say that.

“Thank you so much to my amazing fiancé Graham for being with me throughout all of this️. Thank you for taking over as my PA, dealing with the phone calls, emails and numerous other things for most of this journey. Currently I can only use this in small doses for audio messages and texts. I especially thank him for ordering and getting up at the crack of dawn to collect a pair of ear defenders from a store and then delivering them to me in hospital before going to work.

“Thank you to my amazing parents and Graham’s parents for being there with me throughout the worst and for everything that they did and continue to do for me as I’m making my recovery. My mother Androulla and mother-in-law (to be) Linda for their special thoughts and care in providing me with what I needed, and always delivered with an abundance of mummy love.

Just what I needed

“My three brothers (Banico, Chris and Dimitri), who absolutely hate hospitals yet travelled across and were with me at my worst and were able to make me and us all laugh when I had started to improve. To Jodie, my sister (in-law) who helped with organising my things and brought me lots of girly goodies, smellies and magazines I’m still yet to be able to read! It was nice to smell good despite feeling rotten. To Laura, my sister (in-law), who although she wasn’t able to come sent my brother armed with goodies that were just what I needed.

“Thank you to you all for the telephone chats when I was alone in my room. You made my nights so much easier to cope with. Having the phone on loudspeaker by my side and hearing your voices and chatting brought me so much comfort when I had so many worries and fears running through my mind.

“Thank you to everyone who sent me get well wishes, for praying for me and giving me words of encouragement throughout this journey. I am so very grateful and love you all very much.

“Thank you to all of my amazing family and friends who have such busy lives yet made time to visit and contact me, helped wash and pamper me and loved me. Thank you for your part in my journey.”