Innovative style of everything!

Welcome back! I’ve been locked up in my troubled headspace for a while now but I’m fighting to get out!

A few things have happened.
1. Back on a horse yesterday and today. Ok, not working in my usual manner but its not possible, hence I have adopted a new style. As I can’t feel or control my left side it’s very hard to get weight down on the left stirrup. That as well as left hand not being able to hold the reign as firm as usual makes my new riding style a bit freestyle. I’m thinking paralytic dressage might be an option for me. Then again I’m not sure Parkinson’s is seen as a paralytic sport. I will have to check rules for this.

2. My friend that had an operation in Sweden when I was there has had some news about his tumor that it wasn’t as they first thought a “good” tumor but indeed an evil one and he emailed all of us friends to let us know about the news. This is not a positive in the slightest but as before because I feel how strong and moving forward both my friend and his wife are, I get my strength from them.
It’s terrible news for anyone to get but still keeping a cool head and looking forward its inspirational!

Another news was that I was diagnosed with chronic fatigue syndrome on Monday. Why might you think? Well it’s because they couldn’t find anything else wrong with me. So I got a bin diagnosis. That’s doctor language for basically anyone daring to show symptoms of a disease, but having test results to show they are healthy.
Bin diagnosis often occur as:
Chronic fatigue syndrome

At first I was relieved nothing had shown up on my blood samples. But then I got diagnosed, and that totally slapped me. I had been given the most simplest explanation. But other than that nothing.
There is as always a list as long as any on things you should avoid.
Painting and coffee are the two ill miss the most.
There is no way to cure this.
You can eat certain food but as food already is a problem with me I have to start over again.
There are exercises, but as I suffer from Parkinson’s I can’t do half of them, and as I am still on medication for epilepsy I can’t swim, well unless I’m accompanied by someone strong enough to pull me out of the waster if I had an attack.
So that made me come back to riding. Even getting on is a bit of a challenge as you need to use your left leg. I’ve managed twice now so that’s alright!

My new more positive mindset could of course be the drugs, but I honestly think that the horses and my friends email is what has changed my attitude.

I still have very low energy. To the point of falling asleep un-expectantly, wherever I sit or lie down. Any time, any place. Could be the bin disease? Of course it could but so could so many other things.

I need to get on top of my diet. It’s a must! At the moment, because nothing tastes the way it should or used to, I am super limited to what I consume. I should eat more banana, avocado and apples as well as protein and lean dairy. Sounds easy enough, but when you can’t drive to supermarket, are often too tired to speak, don’t live within walking distance of anywhere shop like, it’s just that much harder.

2013 what a nasty year you have turned out to be. 2012 was always marked as a naughty year but it was only my gut feeling telling me about 2013. 2014, if we make it, there is a whole lot of love and positivity!

Keep Smiling 🙂 if there are things you can’t do, create a new style and you might find out a new you!


Hi there
I’m back from weeks of no publishing. I lie in wait of inspirational spurts that just seam to have abandoned me. Ah never mind. Writers call it writers block I just call it blocked brain.
So another week has been and I have been taking this “new” medicine for 1 week today. It’s to cure both my “anxiety” as well as my low dopamine levels. It’s called Valdoxan.
Well it’s supposed to make me a nicer person. That is so untrue, I have never been nastier. I’m in Sweden now and I think Sweden would like me to leave. I’m awful. Although my mother and husband think its worst for them I can clearly say I am a worry to be around a week into my new treatment.
Oh the trembling anger that I feel under my skin. Rearing to get let loose and inflict injury wherever it sees a victim ready to pounce on.
I was unsure if it was Sweden making me like this but I think it’s more medicine related.
It’s also supposed to make me sleep sounder. No. I can’t sleep through a night. It’s either children or other family members that wake up and then makes noise to wake me up or I just won’t fall asleep. Daytime falling or crashing asleep has been known to happen quite a lot. Well I have another week before I see another doctor so I won’t be able to question anyone about this before then.
So Sweden. How is Sweden? Well other than making me the most awful nasty creature on this planet (think Godzilla, only less green) I think Sweden is ok. The weather is pleasant. It’s fun to see friends that I have been away for for a while and Stockholm never seizes to amaze me. Will they ever finish the roadworks in nortull? I mean seriously? How many years now since they started? 25 years?
Well lets hope it will finish at some point… Or maybe not… What on earth would people do then?
I have in a true marshian style visited a few hospitals. Although my stay is brief and I have no ailments, luckily (?) I have 3 daughters! So for two days now we have been in and out of St Eric’s hospital for a daughters weepy eye. She has a virus I’m told. Could also be weeping over lost lovely mummy and crying over the nasty bitch that has replaced her. But o Sweden! You have so much to learn from Spain for example when it comes to running a hospital…
I understand all the angry bloggers about the situation of healthcare in Sweden. Now I’ve seen it and lived it. I doubt it’s incompetence (naive belief/hope?) but they are just not on the ball for so many things.
Another thing that has happened in Sweden since we got here is one of my best friends has had a tumor removed from his brain. It was a sudden headache and vomiting that drove his wife to go to A&E with him and 10 days later he had a tumor the size of an apple removed. All went well. I’ve seen him (see my need to be around hospitals it’s sick I know it is) and there I must say Sweden looked ok on what they have done for him! Now he is locked in a rehabilitation unit and he is there to take it easy. Heal his wounds. Rest away from his day to day life. See I might have learnt something from visiting him anyway!
Today no real feeling of getting better. Not a lot of the getting better feeling around here much lately. I swear a lot. Cursing like a bald sailor. But seeing my friend well after a freak tumor and seeing his lovely wife also patiently putting their lives together again made me feel a little more positive again.

Keep smiling 🙂 you can keep cursing if you feel like it, but a smile will reach someone’s heart. Reaching a heart will lift your sorrows a little.

Anxious?? Me?? From last week…

Now we have spectacular weather! The dogs and horses might think its too hot, but for us humans its quite alright!
I went to the neurolog yesterday. I had such great hopes of huge impact, sharing of knowledge and answering of questions. Well there was none of that.
I was basically asked if the new medicine had helped and answered as honestly as I could that no, I didn’t think it had had such a great impact on me. My double vision had become worse even when I was still not overly tired.
Then she changed tactics.
It was no fault of medicine. Tiredness etc was all because I was too anxious. Anxiousness would work as a barrier in my healing progress. She said she thought my moving pattern was better now compared to a month ago. I was not sure if I should laugh or cry.
I am the least anxious person you’ll ever meet. To the point where my mother and husband often comment on me not caring enough. I never worry about things I can’t do anything about. If I feel vulnerable about not being able to walk/run or ride, so be it, but I have no anxiety about any of it.
So it might have been yet another war of words, as neither me or the doctor have English as a first language, but to me I feel like I have lost my trust in neurology.
They feel like they just guess, sometimes they get it right, most of the time they are clueless. Where shall I go from here? I had thoughts of going back to Switzerland in August to work at getting better, but now I have appointments with more doctors in Spain.
Mentally it has been a challenging week for me so far. As I now have become “anxious” as well as all the hundreds of things wrong with me you would think this newest accusation might break me a little more… I on the other hand have decided not to let this affect me in any negative ways. I am trying to get better. It’s a bloody far way to go, even if I’m only trying to get back to how I was in April… ignoring my fitness from 2012 where I completed Vätternrundan/became champion of Mallorca in show jumping and managed to do an abundance of sports and playing with my kids. I don’t think the doctors that don’t know me from beforehand, how I used to be, could ever put their academic guesses on what might affect my getting better.

I finished writing this here a week ago, couldn’t find anything to keep smiling about so I left it…

No dopamine

So 3 weeks ago I went on this new medicine promoting the body to start the production of dopamine.
As the diagnose was Parkinsonism, I have low dopamine levels in the brain and the medicine should over a few weeks either work… or not… not really a choice we could make just wait and see.
I was eagerly up for it as I was sick and tired of always being tired. After almost two weeks (last Monday) I was ready to give up. I called my neurologists office only to hear she was on holiday until my next scheduled appointment with her.
The day after that I started to feel a nudge better… And over the next couple of days I got better and better energy. I actually started to feel almost ready to ride a horse again. Then day after day came with more and more challenges. I stayed strong for the first couple of setbacks. But after 3 days non stop terrors I started to break little by little again.
Finally when insuring a car that we had bought in early march was impossible due to the fact the registration documents had been sent to the wrong address. When I went to have another document re-printed to be able to insure the car, at Trafico (the DVLA of Spain) and they sent me across the island instead of telling me my address was alright as my other cars are all insured on my address… Their incompetence almost crushed me.
So canceling all social gatherings as I have no energy to give anyone I deceived to just go with my children to a friends house. There my daughter got infected eyes. Really strange but as the eyes were swelling up we had to take a taxi home and by that time I was nothing any more.
I decided not to go to hospital that evening but at 1.30 in the morning her eyes were so sore, swollen and black pupils, my husband who just had arrived back from cycling in France had to take her in.
Today has not been a day for me.
Dopamine is supposed to be the hormone released when you enjoy yourself. I can understand why my levels are so low now. Not only am I not very happy. I don’t have any enjoyment at all at the moment. Every time I feel a small victory is coming on I get seriously knocked back. Now I don’t believe the drugs are working at all.
All they seem to do is making me aware of all that’s wrong with me. Of all the things I no longer can do.
At this moment in time I feel worse than I ever have done through this whole ordeal.
People keep asking me or telling me that I have a depression. Well now it’s actually happening. The darkness is evolving into a permanent fixture here.
The uselessness of my left side, my double vision, no taste, no power or strength and no balance. Where do I start? Everything is a struggle. Everyone has had enough. Lots of days with too much disappointments, I’ve had enough.
My children when I see them are always either ill or tired or both.
TV at home has been dominated by tennis and Tour de France. Now it’s Tour de France and the Ashes…
Jenny and Sammy have been here to help with moving horses and working them. Sammy is leaving tomorrow morning… more darkness to come here when she is gone.
A new program is starting on channel 5 now “fat, sick and nearly dead” could be about me…. almost.
All this self pity is really annoying me, and not only me. I think everyone has had enough by now. Even the dogs.
So on a more positive note. We are going to Sweden next week. I hope to have enough energy. Flying with 3 children is never easy. We will see.
I don’t think there is anyone that can relate to what and how I’m feeling. I’m sure there is nothing unique with my feelings but as I am a fixer of all things doubter of none it’s new territory for me.
So Keep Smiling 🙂 I can’t say that I do it very often any more so someone has to!

9 months since accident and a whole year older

So day by day life ticks along.
Today being a great day of course. It’s my birthday.
Had an early phone all from my grandmother and she twice said my newfound age! It’s incredible, it must be wrong somewhere.
I know my “birth year” but it still does not add up to my actual “age”.
I think my grandmother with her impressive 93 years might be the only one getting away with telling me as well!
So in the last 3 days I have had some improvements. I don’t get as tired all the time, I have no problem waking up, so that is good.
I have started moving all horses away from the stable I have been in for the last 3 years. It’s sad but I really can’t ride at the moment and trying to get 7horses exercised before 9am is a real struggle. We have moved to a lovely yard, the horses can go out at night but can stay indoor during the days!
It will be a good change for all of us.