Home 🏡. Talks, Lyme Stories, Restaurant Diaster & Great Support.
'Strength grows in the moments when you think you can't keep going but you do.'
'Courage doesn't always roar. Sometimes it's simply the quiet voice saying - I will try again tomorrow.'
The journey was quite long - 3 hours. I reallly wasn't in the best form this morning. We had been out a good few hours with a large group. So lots of talking and with issues with food on top by the end I was drained.
I was considering giving the whole night a miss at first as I was already feeling drained and exhausted. Though I am so glad I pulled myself together and went. The company couldn't have been better. Despite some hiccups it was a lovely evening.
I met another Lyme warrior - having Lyme diagnosised within 3 months but taking a good 15 months to get stable. The stories from Lyme warriors are so touching and people really, really don't realise the massive impact this disease has on your life. It's pure evil.
She was so impressed how well I was doing just being there and hacking being up and about and all the conversations.
She told me her story how she feared everyday that her daughter would be taken from her because she was unable to look after her properly - drive to school, struggling to cook dinner etc. She did not want to go out and leave the house. Luckily she had a supportive family network. Like she explained despite having the bulletpoint rash the GP dismissed that she had contracted Lyme. Meaning Viki had to go privately to be treated. They just said it was viral and nothing serious. Once being privately treated she was able to get the treatment necessary to re-gain her life.
Viki explained how awful it is- you feel like you are losing your mind but you don't want to tell anyone because you think you are crazy, being silly and that the pain isn't anything. Viki was treated by the GP for depression and postnatal depression. She said she knew it was more. She asked me how many friends I had lost during my long road. I explained & she shared the fact she lost a lot of people she thought would have been supportive. Simply because they didn't realise how serious her condition was. She explained that her private doctor also said to her that they didn't know how she was still functioning like my professor has told myself.
Nobody like Viki said, understands what we have to go through daily and the pain we feel.
Bless her she checked up on me all night and helped when we had a food issue. She was unable to eat anything because of intolerances. Having a conference the following day stood infront of people talking she said she could not take the risk of eating and being unwell.
So when we can't order food from a menu this is why. The affects don't just last 15 minutes it gives you hours and sometimes days of distress. This makes life hard & especially socialing.
Suffering from severe insomnia, and having a job that requires you to be on the ball, stand up and talk - Viki found challenging to continue. She used to run marathons and of course she had to give up. It's just so upsetting.
Yes, a tick bite may mean nothing to you. Just a little bite but the that bite is pure evil.
The food side.
Ordering boiled vegetables with nothing on just cooked in water and being told that's fine made me feel relaxed and thankful that ordering had gone smoothly, with no issues infront of 16 others our group.
the food arrived. Rice - fine it was boiled. The vegatables were drowned in oil and spices. I explained this wasn't boiled veg with nothing on it!!
He hadn't really been listening to me when taking the order I feel. As there were two girls on the table making so much noise and very drunk he thought we were all legless and didn't know what we were doing.
Anyway he argued it didn't have oil on it. Infront of everyone - at this point I was getting embarrassed they had all enjoyed bhajj's and samosas for starters whilst I had to sit and watch and now this. Looking like I have nothing to eat and being fussy.
I called another waiter over and asked. He said it did contain a number of oils and spices and that boiled vegatables -plain was the impossible ! Impossible! It is the easiest thing in the world to do! Yet it was impossible. Viki and Cathy my two girlies- managed to get me a clean salad with nothing on it!
I was nearly in tears - not only had I had an arguement but it made me look like I eat nothing whilst everyone enjoys naan breads, rices, curries and batter veggies.
I had eaten snacks prior to dinner but when you eat out you want a proper dish of food! And the dream would be to have a dish you actually want.
Also on their part very unprofessional telling me a dish does not contain oil when it does! Yes it won't kill me- but it will make me seriously unwell and I have to deal with the affects for days after. It's not fair.
Luckily Alex realised my anxiety and upset was building up and offered some words of calm.
Also being around amazing company who understand the situation allowed me to calm down quickly, relax and enjoy the rest of the evening.
When people say to me oh just try going out, just try this and that, it will be fine.
I can't afford to take the risk and when chefs and waiters don't follow your requirements or take care I will be unwell. And sometimes it's difficult to detect if they haven't/ have followed your requirements.
This should not be the case!!
We should be able to go out and order these simple foods and have our requirements taken seriously and carried out correctly - not lying to the customers either.
This disease is lonely enough without these added issues and hurdles. This is why I refuse to keep letting it take pleasures away from me.
So that's why I do get up and try and fight through the day. To see, feel and experience life the best way I can.
I would like to thank the amazing clan for an amazing two days. Being so supportive and accommodating! And just being purely great.
You know how grateful, blessed and thankful I am to have you all as friends.
I can't wait until next time!
Keep fighting and keep going.
Love and peace,