I’ve recently been struggling with my health quite a bit. In November I ended up with food poisoning. This was my biggest infection since my transplant and when I had sepsis straight after the transplant. I can’t even explain how much my body had to fight to get over this infection. I was in and out of the bathroom for 4 days until I couldn’t take the abdominal cramps any longer. I ended up going into a&e where they realised I was severely dehydrated that I also ended up with acute kidney injury. Since then nothing has been great. I’ve been suffering from heartburn since July along with chest pains and when I had a scope in July, everything was great. There was no sign of ulcer or anything. I’m feeling a bit exhausted now because my white blood count and red blood counts have been low. I can feel and see I’m losing weight and I’m still waiting to have an ultrasound or CT scan to see if there are any other underlying issues. Sometimes it is frustrating because just a few years ago I was a healthy person. Now here I am, living a life with so many health related challenges and still trying to breathe and be a mother to my children. This is what happens when you have an immuno suppressed life. You’re sometimes completely alone in this journey because no one will understand your pain and struggle to get through A DAY!
I’ve been feeling very isolated and alone recently. I live in a place where I have just one set of family and the few friends I had have moved on. It gets really depressing at times not having anyone to communicate with physically. I have an abundance of friends that I speak on the phone to and through messages but I miss that physical meeting up and chatting face to face. I don’t really have anywhere I belong here sometimes.
My anxiety has unfortunately increased too recently and I’m struggling to fight this off too along with the indigestion symptoms and epigastric pain. I experienced epigastric pain just before Christmas and the pain was so bad that I was on the floor crying in pain. I was close to calling an ambulance but somehow managed to cope with it. This pain has increased in intensity which radiates to my back and chest. Sometimes I feel like the people who work for NHS have become so busy trying to just fit your symptoms into a label that they miss how the patient is feeling. A few months ago when I had visited one of the Liver consultant’s and expressed my concern, he turned around and said I’m looking for ‘perfection'. I was surprised. Yes, I’m looking for perfection because I didn’t go through so many months of pain and discomfort to only live in pain. I feel sometimes they just check the liver side of things and ignore what else the patient is going through.
Apart from that, I feel so alone. As a child, I grew up in a large extended family. I always had people around me for company. I grew up with a large group of cousins and never had the time to be bored or alone. I had plenty of uncles and aunts around me. Me and my siblings were the similar age so we all grew up together like friends. I do remember though as a child and young teenager, I hated a quiet life. I always craved for people to be in our house. I always made my mum cook for relatives so they would eat with us. Every time I went to my eldest uncle’s house, towards the end of break he’d have to carry me into the car because I never wanted to leave them.
As a young adult, I had plenty of friends and I still have the same friends from when I was 6 years old and 11 years old. We have built so much history and memories together. I am blessed that I still have all of these friends in my life. I know a lot of people lose touch with their friends but fortunately we all still make the effort to be in each others lives.
I knew life wasn’t going to be an easy ride after a transplant but I never thought I’d be living with so many different kind of symptoms and that suddenly I would feel so much isolation in my life. But such is life, we plan so many things but life always has something else in store for us. It isn’t easy either to just uproot and start somewhere new. Sometimes we have a lot of commitments and for me, my transplant hospital is closer to my current location and my daughter has the best medical team on board here. We rarely have to wait for too long for my daughter's appointments and there’s hardly any waiting time to see certain specialists. Aleena's consultants always work together with us and it is hard to find such a great team elsewhere.
I am hoping once I get better that I can start doing things more and feeling more energetic with my family. It isn’t like I sit here feeling sad. I try to do things with my children and husband during weekends. I try to go out and get some fresh air. I am hoping this is just a temporary blip in my health and I will get the help I require.
Being a child is such a blessing, we have no idea about some of these emotions. And I had the best childhood ever. I miss my dad too. When I’d visit him, I’d tell him how alone I felt here or how I missed my life in Cardiff. He was always telling me to move back but it isn’t so easy. I just miss talking to him. Most days in my mind I’m talking to him but I try not to because the realisation soon kicks in that he isn’t here anymore.
I would like to say embrace your healthy life. We have no idea what is around the corner and believe me, if you do not have great health then you’re going to be sad, you’ll find it difficult to do things. So enjoy these beautiful days you have with your family and friends.
I still have hope that I will get better soon and will have the strength to do more things that I haven’t been able to do in the last few months....this includes eating. I’ve cut down on a lot of delicious food to see if that helps(hardly). In the mean time, I’ll just read books and pretend to be the positive character from the book.
I’m sorry if this has been a rant of a post but we can’t all positive everyday. Sometimes we all have rough days and phases in life. Here’s to hoping and praying we all have happier times in life.
