Day 5 - Fam Clan Coming To Town. Emotional Week.Testing Advice.
'A diamond is a chunk of coal that did well under pressure.'
I am not saying this week has dragged by it's been emotional and long.
I feel like I am drunk today I can't see properly and am very dizzy - in a bubble. So let's see how this goes.
After crying myself into exhaustation yesterday I decided I wanted the boys to come up and join us. All week they have wanted to come and support us. Which of course is lovely but the days for them would have been boring . Alex would have been pulling his hair our after an hour and Father would have begun feeling unwell just being in a hospital for so long because of his fear of them.
Though yesterday, especially I knew I needed some laughs, extra support and some of Alex's funny stories.
Mama also agreed that they should come down so they could see for themselves the level of care I am receiving here, where we actually are when we come for treatment and take them to the Indian they are jealous about. I also can't face the journey home on the train. I only just made it down here. The four hours with two changes, a big suitcase and the stress of the week ahead - exhausted me. Now feeling even more wiped out and drained the thought of the journey is just too daunting. I told Mama there was definitely no way I could hack going back on the Saturday when infusions finish at 5pm after starting at 9am. Luckily she agreed it would be better to stay. The boys can then come down we can have a fun night ( as we always do with the fam clan ) and then the boys can bring the car up with a load of pillows to get us home on the Sunday.
Massive stress off, more support & more company. Win, win all round.
I hope the boys see and understand a little more too.
This week has been a challenge a hell of a challenege. At times I don't know how I have got through it.
Mama and I both thought that we would be done by 1pm everyday and just have four hours worth of infusions. Though having the extra few added has meant it has been a good 8 hours everyday! For a total of five days! There are no breaks or breathers! Once your bag is empty the next one is ready by the side of you to go and within minutes the doctors are in changing them.
Which is amazing and top class service!
But you do tire and it is draining! Surprisingly.
The end is in sight now and I can't wait for my own bed. I am in so much pain and exhausted. I can't wait to see some of my friends for a good gossip and hear their stories from the week. I love catching up and most importantly hearing about life.
I know being treated down here so far from home sometimes backfires in the sense friends and family aren't round the corner or can come and support, give you that friend support, love and company that at times within the treatment you really do feel you need. As it does becomes lonely . However you have to ride out the loneliness - and I am not being ungrateful for having Mama with me! She is of course the best!!! However I don't want her bored all day and encourage her to go for a wander and go into town for a bit of fresh air but the hours that she does that through the day I find hard. Not because I am scared of reactions etc - as dealt with the first one on my own and I know what to do with the nurses but it's just the company. You are already shut off in a room, laid on a bed, attached to tubes ( feeling a bit trapped ). You can't get up from the bed very well because you are weak and you are in so much pain, you are dizzy so need support and help with going to the toilet etc you need a hand getting there. Though personal issues such as that one have to come second on the priority list to health. The level of care I am receiving I wouldn't ever get back at home and that's the truth. I have dealt with loneliness and felt isolated for many years - although it's upsetting to me, I can deal with it! My health on the other hand is a ticking time bomb so therefore is number one! After being about number 50 on doctors and consultants lists for over a decade.
Because I am crazy!!!
Never mind that my body is being attacked - worst of all vital organs I really can't lose ! And I can't tolerate hardly anything anymore. As my immune system tries to attack everything that is slightly alien to it. So any food toxins, chemicals as well as viruses. We all know how much is added to our foods these days.
My mind is the issue. As I am just a silly little girl that can't tolerate pain, wants attention and wants to feel this way.
This doesn't just anger me in a professional way at the pure dismissal and disregarding my true health but also it is accusing me and my personality of being someone I am not and have never been!!! Never will be.
I fight every damn day to be normal! So why would I want/ choose to be unwell? And pick a disease that is dismissed by nearly ALL GP's in the U.K. (Which the nutritionist said that they don't understand Lyme as are ignorant to it ), there is no known cure and treatment is on going and well not the most pleasant and not being able eat my favourite foods my mouth water for everyday and I sit and cry inside watching all you lucky gems enjoy them?
Who would inflict that upon themselves?
Makes me feel sick!! I really wish they could walk in my shoes for a day - then call me mad!!!
Let's just say it's been an emotional rollercoaster, some very difficult times that we have fought through but some positive lights shining through and the strongest support I think my Mum would agree that we have ever received.
So thank you Breakspear.
I also want to raise the point that a few of you have reached out displaying symptoms of Lyme and don't know how to take the next step into getting tested and treated.
I strongly recommend having tests done by Armin Labs in Germany. They have the latest equipment and are easy to deal with too! We have used Armin for all of my tests. You do have to visit the Same Day doctors clinic, there is one in Deansgate - Manchester. To actually have the bloods drawn and packed before you ship them off via Fed Ex. If you are worried or need information please don't hesistate to reach out. My aim & mission here is to help you!
You can also check out the Armin Labs website via Google but I also have the direct number if anyone requires it.
I will help is anyway I can.
I am an butterfly,
Through the nights I often cry,
In pain I lie,
Feeling often like I may die,
My head crushing my skull,
Colouring bright pictures to make the day feel less dull,
In the ring wanting to fight like a bull,
Wanting once again to feel beautiful,
Pains left untold,
Leaves tears in the dark to unfold,
My pictures so colourful with messages so bold,
Your heart and soul to fate you have sold,
You pray for the day,
You can say,
I am feeling fine and actually feel that way,
Not holding yourself up with a false smile and keeping the pain at bay,
What you go through,
Has made a stronger you,
Though I truly resent the pain - I do,
The storms I must fight through,
Believing there is a reason - why me?
To make me into the strong woman I want to be,
Rolling like the waves on the ocean so free,
A sun rising - you will see,
The stress and anger melting away,
The sun once again shining everyday,
Keeping that rain and pain far away,
Making you happy in every way,
I am a butterfly,
High in the sky I aim to fly,
I am a butterfly,
Who's colours will also shine through for you when you want to cry,
I am butterfly,
Who will never give up or lay down to die.
Love you my warriors.
Love and peace always!