Well after last week's last minute panic and stress
WE MADE IT HERE
Greetings from Sunny Portugal, I'm sitting on the veranda in the shade (ginger awareness) drinking freshly squeezed orange juice and taking in the view. It's so beautiful and relaxed here.
I thought that the first thing I should update is how the stress was affecting me, and after a couple od days I'm pleased to say almost everything is now back to normal. Even better I think is that my reaction to that level of stress seems to be perfectly 'normal' because Gareth was a ruined as I was by all the stress, it's taken him as long to get over it as it has for me. Obviously the sensory problems were not ones he had, but everything else - pretty much text book 'normal' people response to that kind of panic.
I have a healthy supply of Portuguese 'medicine' should I need it and an invitation to a BBQ next week with our lovely neighbours who are getting married here next month. We will get to meet Brian's son who owns this lovely house we are staying in.
We've had out first Piri Piri chicken and discovered an amazing Bitter Almond liqueur which beats Amaretto every time and discovered some really lovely wine which is €2.99 a bottle YAY
Gareth's just told me he needs a haircut desperately - I had to laugh because he was standing there with his hair all stood up on end looking 'fluffy' for want of a better description. I had jokingly said yesterday that perhaps while we are here I'll find a hair dresser and get mine all chopped off .... the temptation now is getting very strong to join him under the scissors ..... watch this space.
Just a short update I'm afraid, but everything is awesomeness. Love and anti bac hugs xxx
It's been over 9 years since I started my Lemtrada journey it's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Monday, 26 September 2016
Thursday, 22 September 2016
Week 18 - Stress and it's effects on my MS
Our flight to Portugal leaves Gatwick at 06:10am on Saturday morning and something absolutely catastrophic has happened.
Gareth having checked his passport a week ago went to use it as a form of ID to collect a parcel and discovered the photo part of the passport is damaged and will not be allowed to use to fly. He's now driving up to Durham in the northeast of England (a good 5-6 hour drive) for an appointment at 9am tomorrow where they may or may not agree to do a replacement document in 4 hours.
If they don't replace it then the likelihood is the whole first week of our holiday might be lost.
I've got the DVLA to agree to send me temporary driving documents by recorded delivery which hopefully will arrive tomorrow which would mean I 'could' fly out there on my own and he joins me later if he has to wait for a replacement for the requisite 5 days.
The stress and worry of it all has sent me into a complete tailspin, my legs are completely numb, as is the lower part of my torso, and everything is weak and trembling. and I'm basically a complete and utter wreck.
I know it's just stress & worry about passports, replacement driving licences, holiday and that Gareth's driven to the other end of the country with the hope they take pity and issue a new passport in 4 hours rather than a week.
Stress has such a huge impact on my body it's like an amplifier for every rubbish thing that MS made me feel - or not feel as I am right now. It's in my mind, logically I know this but it's like the clock has been turned back to last March and it's scary.
I've come home to work from home to the comfort of the sofa with the puppy dogs with food porn on in the background. I've decided to have a relaxation marathon so I have a very expensive ready meal for one from the farm shop - sad lonely girl food.
Gareth has made it to Durham - apparently the hotel is a complete duffer but it's a bed for the night so not exactly the end of the world.
We are both incredibly on edge and nervous about tomorrow, it's so very important to both of us. I suspect sleep tonight might not be the best and that's probably not going to help much with the amplified sensations that I'm experiencing, but hey if it all goes to plan I have 2 weeks in Portugal to relax and de-stress.
All available extremities are crossed, please let him come home tomorrow with a passport
Gareth having checked his passport a week ago went to use it as a form of ID to collect a parcel and discovered the photo part of the passport is damaged and will not be allowed to use to fly. He's now driving up to Durham in the northeast of England (a good 5-6 hour drive) for an appointment at 9am tomorrow where they may or may not agree to do a replacement document in 4 hours.
If they don't replace it then the likelihood is the whole first week of our holiday might be lost.
I've got the DVLA to agree to send me temporary driving documents by recorded delivery which hopefully will arrive tomorrow which would mean I 'could' fly out there on my own and he joins me later if he has to wait for a replacement for the requisite 5 days.
The stress and worry of it all has sent me into a complete tailspin, my legs are completely numb, as is the lower part of my torso, and everything is weak and trembling. and I'm basically a complete and utter wreck.
I know it's just stress & worry about passports, replacement driving licences, holiday and that Gareth's driven to the other end of the country with the hope they take pity and issue a new passport in 4 hours rather than a week.
Stress has such a huge impact on my body it's like an amplifier for every rubbish thing that MS made me feel - or not feel as I am right now. It's in my mind, logically I know this but it's like the clock has been turned back to last March and it's scary.
I've come home to work from home to the comfort of the sofa with the puppy dogs with food porn on in the background. I've decided to have a relaxation marathon so I have a very expensive ready meal for one from the farm shop - sad lonely girl food.
Gareth has made it to Durham - apparently the hotel is a complete duffer but it's a bed for the night so not exactly the end of the world.
We are both incredibly on edge and nervous about tomorrow, it's so very important to both of us. I suspect sleep tonight might not be the best and that's probably not going to help much with the amplified sensations that I'm experiencing, but hey if it all goes to plan I have 2 weeks in Portugal to relax and de-stress.
All available extremities are crossed, please let him come home tomorrow with a passport
Monday, 19 September 2016
Round 2 week 18 - bring on the Peri Peri chicken
Saturday is so close I can almost smell the chicken. Not that I'm wishing time away .... I have 4 days to leave work in a place where I can walk away and the world won't end.
We have laundry and packing to get sorted. I've remembered to buy sun screen this time before we leave as last May I was only able to buy the high factor stuff with 'glitter' in - I looked like that sparkly vampire from the Twilight books for a week and I swear there's still glitter in some of my clothes even though they've been washed dozens of times since then.
The K9 Pleasure Park which has opened just up from our house has been a complete gift, a completely secure 'private hire dog park' where unless you've invited them to join you there will be no other dogs or humans around at all. Winston is able to go completely off lead, run himself exhausted and take regular dips in the 'dog pool' under the fountain (hose)
It means I spend an hour on my feet mostly wandering around throwing tennis balls for him and picking up the copious amounts of dog poop the little beasts manage to vend.
The weekend has been quiet and relaxing with trips to K9PP and a little pre holiday shopping. Work is - well it's work ..... come in do stuff get frustrated, fix stuff go home and forget about stuff.
All in all life is pretty fantastic with everything going to plan.
Now just need some Portuguese sunshine to round out the month
We have laundry and packing to get sorted. I've remembered to buy sun screen this time before we leave as last May I was only able to buy the high factor stuff with 'glitter' in - I looked like that sparkly vampire from the Twilight books for a week and I swear there's still glitter in some of my clothes even though they've been washed dozens of times since then.
The K9 Pleasure Park which has opened just up from our house has been a complete gift, a completely secure 'private hire dog park' where unless you've invited them to join you there will be no other dogs or humans around at all. Winston is able to go completely off lead, run himself exhausted and take regular dips in the 'dog pool' under the fountain (hose)
It means I spend an hour on my feet mostly wandering around throwing tennis balls for him and picking up the copious amounts of dog poop the little beasts manage to vend.
The weekend has been quiet and relaxing with trips to K9PP and a little pre holiday shopping. Work is - well it's work ..... come in do stuff get frustrated, fix stuff go home and forget about stuff.
All in all life is pretty fantastic with everything going to plan.
Now just need some Portuguese sunshine to round out the month
4 Months Post round 2 blood results - welcome back little lymphocytes
A little late this month in getting the results and publishing them, in my defence ...... well really there isn't a defence I simply forgot to call and get them on Friday and it was Sunday evening before I had the 'oops' moment.
Nice slow rise this month on the lymphocytes after a couple of decent sized jumps.
I'm feeling great, no infections, MS symptoms or 'stuff' to report, just bobbing along nicely.
Nice slow rise this month on the lymphocytes after a couple of decent sized jumps.
I'm feeling great, no infections, MS symptoms or 'stuff' to report, just bobbing along nicely.
Monday, 12 September 2016
Round 2 Week 17 done
Week 17 is here and Facebook has reminded me this morning
that on this day 2 years ago I was admitted to hospital as an emergency
admission with a suspected brain haemorrhage. Something had gone ‘POP’ in my
head behind my right eye 4 days earlier and I’d felt like I had a migraine that
wouldn’t quit – then I nearly passed out in the supermarket.
Over the next 36 hours with an emergency CT scan and lumbar
puncture, they managed to rule out brain haemorrhage, strokes and tumours in my
head. For the first time I heard someone use the words ‘you may have Multiple
Sclerosis’
I know I’m weird, but to be honest that was absolutely the
best news I’d had all weekend – after all the first three can all have fairly ‘fatal’
consequences.
Perhaps this
anniversary is cause for celebration?
It certainly answered a lot of questions about individual annoying
things that I’d been ignoring for at least 2 years prior to the diagnosis.
So very much has changed since this day 2 years ago in terms
of both my health and my life.
Health-wise I’m better, so much better than I’ve been in
years, all those strange MS things that made walking, seeing, thinking so very
hard are now gone.
Life wise, we have been
in our beautiful new (150+ years old) house for over a year. Gareth and I, the
dogs and cats have a wonderful life. Our family has experienced another 3 heart
breaking losses on top of those in the couple of years before. I’ve managed to
spectacularly fail at my escape from the rat race plan by winning the euro
millions – but it is Tuesday tomorrow and today I feel pretty lucky so I’m
going to invest in a couple of lucky dips and keep my fingers crossed.
This week it is ‘stabbing time’ again, one last set of
bloods from the lovely ‘one stab wonder’ nurse at my old doctors surgery before
my records finally transfer to the new surgery (I had a wimp out on
transferring the registration before my updated drivers licence was returned,
wanting the paperwork to be completed by a doctor who actually ‘knows’ me)
The James Villa app reliably informs me that we have 12 days
remaining before our 2 weeks of sunshine, relaxation and lovely Portuguese culture,
food and drink. I’m so excited I’ve been informed by my colleagues that for a
Monday morning I have been unbearable with my cheerfulness, smiles and
positivity …… oops LOL (just making it worse now I suspect)
The weekend was a study of relaxation; not doing a lot
(apart from Oxygen Therapy as always) a couple of fairly late nights but long
lie in’s in the morning. Gareth made the best Indonesian Peanut Chicken curry
he’s ever done on Saturday night, I managed to perfectly roast a sirloin Rib
roast for Sunday Dinner (the dogs were very miffed that they were not offered
leftover’s of either meal – 1 – flatulent dogs absolutely NO curry – EVER – 2 –
roast sirloin – only in your dreams puppies)
So that’s it – boring boring Tracy another week crossed off
the Lemtrada timeline and it’s still all fantastic.
Monday, 5 September 2016
Week 16 Post round 2 - where did the nice weather go?
Greetings from a rather 'moist' Berkshire. With the arrival of Autumn the sunshine and lovely weather seems to have departed and left behind never ending drizzle.
We have new neighbours on our left who moved in over the weekend and the ones on the right go any day now (sad to see the left go but like the new people very much - can't wait to see the ones on the right leaving as they clearly have deep issues in their relationship which are unhealthy)
Last week was relatively quiet and uneventful, work relaxation and some socialising with great friends on Sunday over epic wood fired pizza (although we didn't rehash much of our plans and roles in the upcoming Zombie Apocalypse this year - Possibly because Rob has gifted us each with a copy of 'The Zombie Apocalypse Survival Guide and should all be studying it regularly LOL)
19 days until we go on holiday and 18 days until the dogs go to doggie bootcamp in Dorset with 'Uncle Craig' and his pack of dogs. we're hoping they learn how to greet other dogs and people in a controlled manner and hopefully Winston learns not to bark at random stuff like leaf's floating through the air and anything that makes a sound outside the house.
MS wise this week has been entirely uneventful and symptom free apart from the odd sofa snooze in the evening.
I really don't have anything more interesting or exciting to report which I guess you could view in one of two ways .... it's either
We have new neighbours on our left who moved in over the weekend and the ones on the right go any day now (sad to see the left go but like the new people very much - can't wait to see the ones on the right leaving as they clearly have deep issues in their relationship which are unhealthy)
Last week was relatively quiet and uneventful, work relaxation and some socialising with great friends on Sunday over epic wood fired pizza (although we didn't rehash much of our plans and roles in the upcoming Zombie Apocalypse this year - Possibly because Rob has gifted us each with a copy of 'The Zombie Apocalypse Survival Guide and should all be studying it regularly LOL)
19 days until we go on holiday and 18 days until the dogs go to doggie bootcamp in Dorset with 'Uncle Craig' and his pack of dogs. we're hoping they learn how to greet other dogs and people in a controlled manner and hopefully Winston learns not to bark at random stuff like leaf's floating through the air and anything that makes a sound outside the house.
MS wise this week has been entirely uneventful and symptom free apart from the odd sofa snooze in the evening.
I really don't have anything more interesting or exciting to report which I guess you could view in one of two ways .... it's either
- really great because there's nothing bad (or good) to report about the MS
- quite tragic in regard to the lack of social life and interesting stuff
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