I’ve been worrying about my baby brother over the weekend. Most of you will know from some of my posts and tweets Alex is a big part of my life so to get a panicky call from him on Saturday and hearing him seriously struggling to breath left me worrying, A LOT. As well as struggling to breath he’s had these strange ring rashes appear which look very much like Lupus.
Alex had tried and struggled to go to his nearest shop and rung me worried, he didn’t want to walk to the hospital ‘in case it was a waste of time’. He suggested waiting until the morning.. So I put my Mummy voice on and insisted at the very least he call 111 for some advice.
Panicking
As soon as I put my phone down I began to panic, Alex doesn’t have the greatest immune system and has weak lungs from being born prematurely, he also suffers from Asthma. Temperatures were below 0 and I was worried he would get worse but luckily he did what he was told and called 111. An ambulance was sent out to him and the paramedics decided he needed to go to hospital. His heart rate and irregular breathing was concerning them so they insisted he was wheeled to the ambulance instead of walking which he wasn’t too impressed with.
He text me to let me know he was waiting for the ambulance then understandably I didn’t hear from him for over an hour. I spent the entire time unable to concentrate on anything, constantly checking my phone for an update. Eventually Alex let me know he had bloods taken and had ‘things put all over his chest’ (ECG) and he was scared. I tried to distract him whilst he waited, chatting about a documentary I was watching on the London Graveyard’s by London Liverpool Street Station.
After some rambling back and forth he eventually got his results. It turned out Alex has a lung infection and suspected Lupus. He called me as he walked home, struggling to breathe. Hearing him so vulnerable, crying from the pain, being so scared alone was horrible, I just wanted to be there and give him a hug. He was given antibiotics for the lung infection and his NHS number (At last!!!!) so he can finally register with a GP and get a referral to a dermatologist to confirm the suspected lupus.
The two major symptoms are joint and muscle pain and an extreme tiredness that won’t go away no matter how much you rest.
Rashes, depression, anaemia, feverishness, headaches, possible hair loss and mouth ulcers may all be part of the pattern of lupus.
Noticeably, whilst the two major symptoms are invariably present, people with lupus can differ greatly in their symptoms and how the illness can affect them – life-threatening for a few, very mild for some.
We are all extremely worried about his health, he has had all the symptoms that point to lupus for a while now. This worried me just as much as the lung infection. He is my baby brother and I hate that I couldn’t be there with him. Not having a car is becoming more and more stressful, things like this happen and I’m left helplessly worrying instead of being there to look after him. I’ve always tried to look out for my baby brother, I remember holding his tiny little hand through the incubator for the first time. He was so tiny and fragile and spent a long time in NICU so when he finally came home I couldn’t leave him alone.
I fed him & changed him as a baby, I taught him his first words, how to read and write. He learnt his first colours from a song I made up with a row of coloured teddies over his bouncer. Red teddy, yellow teddy, green teddy, blue! He may be my baby brother but I guess in a way he’s always been my baby too which is why I’m so protective of him. To me he’s just like the girls, he’s a huge part of my world and I always feel the need to care for him so times like this are extremely tough.
Brother & Sister forever
Alex and I had an unusual childhood, he was in care from 7/8 years old but this has never stopped us having a strong relationship. We have only lost contact once for a few months when I left home and went into a women’s refuge, I didn’t have any contact details for him but eventually we sorted it and contact resumed. When I had Eva he had been sectioned and was in hospital after several suicide attempts. I knew I had to jump in some how and bring some normality back to his life so I arranged home visits, had visits from Social services etc. to ensure our flat was safe for him.
Since then we have kept in regular contact and gone through a lot together, I know he almost see’s me as a mum to him too and with him not talking to ‘her’ right now means I am pretty much all he has, knowing that and not being there was so difficult. We were brought up to avoid Dr’s and Hospital’s, terrified that anything and everything would end in needles.. no wonder I had a needle phobia! Knowing he was sat in the same A&E room where he sat as a child being told off for having a broken leg worried me, he’s also overdosed several times and ended up there too. He suffers from PTSD and I was terrified this would set him off but distracting him did seem to help.
Going forward
I’m hoping the antibiotics help and his lung infection goes away. I’ll be focusing on getting over to him as much as I possibly can over the next few weeks to help get him registered at a GP. We also need to get his referral for a dermatologist to find out if he does have Lupus and what we can do to keep him as healthy as possible. Lupus is extremely complicated and Alex is understandably terrified as he has no clue what’s going on. He’s had so many of the symptoms that it really is worrying but I intend to look after my baby brother as much as possible!
Have you ever been in a similar situation? Do you know anything about Lupus that may help? Please do leave a comment if you have any experience with Lupus.
The lead up
