Hemel And Back.
'I often want to throw the towel in, but then that would mean more washing.'
Finally home after what seemed an ever-ending car journey home.
It was a long six hours, having to detour due to traffic and accidents was't helpful. But not much we can do.
I am just glad to be home- my joints were stiffening up and the pain was making me feel very sick which isn't helped with all the movement.
We are home though.
The busy two days kicked off in more of a rush than we had hoped for. Having to rush to the local doctors for emergency bloods because of my liver being so inflamed and my white blood cell count ( my immune system ) being low. My liver has become extremely inflamed since beginning new treatment. The toxins that are being killed off are putting a massive strain on my immune system causing my blood cell count to drop and my liver can't flush out the extra toxins efficiently. Meaning they build up and cause inflammation.
My doctors knew I was going to Hemel and said they would fax my results over to Breakspear so then my results could be discussed and a plan of action put in place.
After bursting my vein and becoming a pin cushion in order to get the bloods we set off on the long journey. Already, stressed, zapped and in pain.
The journey was a straight one, but still a solid five hours. Once arriving at Breakspear I was exhausted. My day had begun at 6am as I had failed to pack and was having to make sure I had done all my vaccines, breakfast and relaxed before our 9am scheduled depart time. The doctors had thrown me off though. Having to be ready for 8am with a 10minute warning. So the rush had knocked me from the get go.
Breakspear - as always, was full of people being treated and enjoying a break in the waiting area. Surrounded by friends and loved ones who had come to visit them and offer their company. It's always so nice to see. Though the busy atmosphere was a little overwhelming. I looked like death and talking was zapping me further but all the staff are just so lovely that they all come and say Hi, check in and give you hugs. Which is amazing but you feel guilty when you feel zoned out.
The level of care is just out of this world. I was only there (originally) to see my professor for a half hour consultation yet the nurses could see I was in pain and were offering me a comforter chair or bed on the ward.
Then kindly another Breakspear patient, and swimmer Nathanael came down to see me whilst I was down. Unfortunately we were cut short as I got in earlier than expected but him telling us his story and sharing it with my parents I think really did the world of good. Especially for my Dad as this only his second time to Breakspear and he hadn't been here when all the nurses, staff and patients were in. So seeing other patients, how amazing the staff are, what a legend Professor Puri is and another patient's story, helped open his eyes.
After the care I get at the doctors - always dismissed and made out to be the difficult one to being around others who have experienced the same level of care, literally been through hell and how Breakspear has saved their lives. Otherwise they would have died or at the very least gone to the grave earlier ( shocking and hard hitting but the truth. ) That we really are very poorly and can't snap out of it.
I know we are all dying but we have to fight these viruses as hard as we can to try and keep our feet on the Earth for as long as possible and living in the best bill of health we can achieve.
It was lovely to see & speak to Nathanael and I am truly grateful for his effort and making the journey over to see us in clinic.
We then went to see the professor who was alarmed with my liver results and said I was right to stop the treatment. My liver needing a rest and to be treated first.
Along with herbal medicines for vitamin C to strengthen my immune system, we also spoke about liver detoxing herbal medicines to help. With my health being so bad he issued me to have an IV infusions there and then to support my liver & immune system. I could have had it this morning but was so zapped I felt whilst I was there let's just get hooked up and deal with an reactions or feelings.
So we did.
So as always our 30 minutes ended up being 3 and a half hours.
Nothing gets left or dismissed and we got the treatment I needed there and then. Of course ideally I think my professor would have liked me to do a few days of detoxing IV's but we had my Dad with us and I didn't think I could hack it this time. So we opted for tablet form and a follow up appointment in a week over the phone.
Mama was in her prime as we got given a room, bed and comfortable treatment chairs for my Mum and Dad. My mum is used to a standard chair so thought this was amazing.
There wasn't any vein bursting, we got hooked up straight away and the infusion on.
We had to go slow, to prevent it burning me but in the end we had cleared out the whole clinic and would have been there until Christmas if we didn't speed it up.
I was happy when it was all in.
I was burning.
As many of you who follow me will know I have been suffering with burning especially on my left side. Almost like acid running through my veins but I don't feel sweaty hot but often cold.
At first we thought it was my liver being inflamed that was causing the burning. Yet the burning subsided as my liver became more and more inflamed.
Meaning it must solely be a Lyme symptom. It is known to affect Lyme sufferers but at first we did think it could be my liver. So the immune boost has probably woken up the bacteria once again causing the flare up in my burning with them reacting to my body picking up its sword and fighting back.
( Just when they thought they were winning suppressing my immune system once more and protecting themselves ) don't fight with Sophie, keep them on edge ey.
So I am feeling very sick, sore throat, headachy, stomach aches, burning has heightened, joint pain is awful. It may be this way for a few days for things to settle once again. This is the fun of chronic illness - everyday is different, we don't know what we have to deal with or how we are going to feel.
With my immune system being suppressed too and I am reacting more and more to everything, my throat is in constant discomfort.
On returning to the hotel I was secretly worrying about going out for dinner. I would have opted for the hotel restaurant. I was zapped and Mama and myself normally just have the night in especially on the first night as we are always both so tired. We wanted to show my Dad places we enjoy to dine at when here and well the full Hemel experience so he can get more of an insight about what really goes on when I come down for treatment.
I am glad we went out though. My Dad loved the Plough Inn pub that is mine and my Mum's favourite and we had good conversations about life, treatment and health. Conversations we haven't ever had in depth. There were tears but needed tears. It was a good evening all around. Come 10pm though my bed was calling me.
I am thankful to my Dad for soaking the Breakspear 'life' and surroundings up, and enjoying where we enjoy to escape from the same four walls, surrounded by lovely surroundings and yummy food.
I hope he can see they are amazing people (patients and staff ) and a life saving medical centre!
Although he was very busy and wasn't a great time for him to come down I hope he is pleased he did. I am.
Thank you Papa.
Now it's time to rest up and enjoy a chilled night. With a more detailed blog tomorrow.
Sophie is exhausted.
Thank you for reading & thank you to my fab parents for their company, love, support and driving this past two days!!!
Hooked up to my boyfriend Bobby. After Bobby Kennedy.
Named after Bobby because he is such an amazing man, he was the brains behind JFK's presidential rein and he dedicated his life to taking down the Mafia. He would joke that his knew the Mafia would kill him ( like us and our viruses ) but he made it his mission to try and take them down, give them a battering. In hope one day they would become extinct. Again what we hope to do with Lyme. We hope to spread awareness and although we can't save ourselves, we can hopefully save others and further generations. That's what counts!! Hero's that inspire us and show us we can keep fighting!
my favourite person 💕❣️.
Showing Papa our favourite hang outs and where to find us if he ever loses us in Hemel!
Love and peace