Arrghh Heat!

Well those of you in the UK will know that we are experiencing a heatwave at the moment. To my friends over seas you will be laughing your heads off that temperatures of 25 degrees Centigrade are considered a heat wave when you have to put up with temperatures much higher!

Those of your with POTS or dysautonomia will know heat is the absolute enemy of our condition! One day of the heat was fine but this has been going on since Monday, its now Friday and I have seriously had enough! I’m not only having to cope with swollen feet but my skin has become incredibly light sensitive and I’m burning in a matter of minutes. I’m having to wear factor 50 sun block and I am still burning!

The first few days were OK for me although some of my POTSY friends were already struggling. I actually felt quite smug that I was coping so well in the heat and then yesterday it hit me like a hammer. Every time I stood up I felt like the world had turned into a merry-go-round and it didn’t stop until I was seated again. Even indoors there was no escape. Today its around 1120am and I feel sick with the heat and I am spinning! I checked my temperature and its running a little hot for me. As usual my crazy autonomic nervous system isn’t working and giving my body all the wrong signals.

I have taken midodrine today (after another break because of bladder issues) in the hope it will provide me with some relief. It hasn’t so far but every time there is a small breeze I’m covered in goose bumps! My toe nails are blue despite the rest of my body feeling like its going to melt. What fun!

We have had a bit of a stressful week here my mother in law has just been diagnosed with cancer and we are waiting to find out what stage it is at. Hubs is very up and down as its the second time his mother has been diagnosed with a cancer. The last time was over 25 years ago and she sailed through. This time however its different. This type of cancer has no cure, isn’t treated aggressively in older people and will eventually lead to the inevitable. It was found totally by accident and the consultant believes its been caught very early. My mother in law is very sad obviously about the diagnosis there have been more than a few tears. Its going to be tough all I can do is be there for my husband and try and support him.

It makes the challenges I face in my life quite insignificant, here I am moaning about a little heat when she is facing this.

I don’t want this post to be all doom and gloom so I will let you know I have been out in the garden and managing to potter around a bit. We have been preparing the pots ready to get some bedding plants in. We are really behind this year as the weather has been very cold, last week the temperature barely got above 12 degrees centigrade. The temperature has been really dropping at night and would have killed off anything we planted so we have been putting it off for as long as possible. I am getting quite excited now about getting some plants in and adding a splash of colour to the back garden!

A solitary strawberry plant has survived so when it bears fruit Mollie will be able to steal them! Shes obsessed with the pink broom (plant not a sweeping implement!) and spends each morning sniffing it before she finds the perfect spot to sunbathe! The other two dogs only go outside when I am out there, they have never been into sunbathing!

I hope everyone has a lovely weekend what ever they are doing.

Thank you

I just wanted to do a quick post before I head back to bed to say Thank You, to those of you who have left comments or who have contacted me to say that they enjoyed my last blog post. It means the world to me that you enjoyed it and understood the place that I was coming from.

I thought I would also take this opportunity to update you on my recent hospital visit which took place last week. The appointment went very well I saw my consultants registrar although my consultant did pop his head around the door and say hello.

The results of the appointment are that I now have the registrars e-mail address and I am to forward to her any info / Medical papers / videos that I come across on the various forums that I lurk on. I think the registrar may come to regret this as my last email contained close to 14 medical journal articles! Due to a lot of the forums I belong to being mainly American a lot of the research comes via the Vandy, Mayo and Dr Grubb. Some stuff I am sure that she may have seen others I dont know. Hopefully they will be of use to her and my consultant as they are hoping to start some research. I know its along genetic lines as yet again I was asked in the future would it be ok if they took my blood to have a look at it. I asked them would they have the vascular access team on hand as my veins are notorious for refusing to give up the red stuff. My consultant and registrar both said “oh no your one of those!” meaning its not uncommon for my feet to be used as the puncture site!

I have to continue with the midodrine for the time being to see if we can get to a dose that I can tolerate and doesn’t irritate my bladder. The next appointment is in August and if the midodrine is still not playing ball with my bladder its time to move onto the next medication. I am happy to continue but I already know it doesn’t matter what dose I am on my bladder really doesn’t like the stuff, it reacts on 2.5mg, 5mg, 7.5mg and 10mg – I don’t think there is an optimal dose. But as they said I have a good head on my shoulders and they know I will play the game until August…. unless I have any nasty urinary tract infections and then I will say no.

I asked about taking a small dose of beta blocker at night to see if that helps me sleep better. I had come across some research that showed POTS patients also have symptoms whilst we sleep and due to that we don’t get any useful, restful sleep. We are constantly running on an empty battery, if you add the pain of EDS into the mix its no wonder we feel like extras on the TV series The Walking Dead! I can sleep 12 hours and wake up feeling like I never slept at all!

They are thinking about it and then getting back to me. So fingers crossed.

I also came across this brilliant blog http://hypermobilityhope.blogspot.co.uk/2009/08/hypermobility-in-lower-body-pictures.html it shows you some of the bendy crazy stuff that we EDSers can do. It also explains why we are so clumsy all the time. Our brains basically dont have a very good idea about the space our body takes up, hence the permanent bruises on my knees from walking into my bed, the very same bed that has been in that position since 2004! Why all the door frames in this house gang up on me. I have to consciously think about where things are in relation to me all the time. The onetime I don’t do it I walk into things! So thank you to the author of this blog.

Thanks for reading!

Soul Searching

Apologies again for not blogging regularly. This year seems to be getting away from me! I have been doing a bit of soul searching to try and find the reasons why I’m not blogging other than the health issues. I understand now why.

When you blog you put your heart and soul into it. You hope your readers are interested and understand. They may not get the illness side of things but you hope they will empathise. You hope that they are clever enough to see the humour in your posts, that despite all the rubbish stuff that is thrown at you, you still rise above the situation.

However I have found the truth to be very different ….. its not connected to my blog its actually other social networking sites. Its very difficult for me to come up with witty and amusing posts when life consists of being virtually housebound. I have discovered that I am not “allowed” to say how I feel to people who are supposed to be my “friends” because I’m always sick and its depressing to hear. I apologise that you find my life so depressing, just be grateful you don’t have to live it.

People who complain my posts are depressing don’t seem to understand that a good day for me is being able to do something normal like go out for lunch (a rarity) or not spend the day in bed. When I post about my health its because it has been a particularly challenging day and I need to vent. Who can I vent to when I don’t really see any people other than my husband? Out of the hundreds of “friends” I have I see two on a regular basis. One I have been friends with for years and one I have made friends with since becoming ill.

I on the other hand don’t find my life depressing, am I odd? I find my life humorous, a challenge, filled with love and quite a bit of support from real friends who know me and understand that I will never get better (the chances are I will only get worse). They don’t have to wait for me to be well to come over and see me, as the chance of me being well on a particular day are negligible. I make the most of what I have and enjoy it. I made a decision a long time ago that sitting around crying and banging my head against a wall for the rest of my life would be futile. It would be a waste of the precious little energy I have and I wont waste that.

I have wobbles when I do feel depressed, last year after several diagnosis were made and I was told the words “treatable not curable” I cried for two days solid. I have days when I get down but I give myself 24 hours and promise myself that tomorrow will be better. I think when living with a chronic illness you would be pretty strange if you didn’t have your ups and downs.

I have in the past had to let “friends” go. Friendships change over the years and when one of the friends becomes ill and is no longer able to do the things they once did it can be difficult for the other to get their head around it. I understand that completely as will most people who live with a chronic illness. Be ill for more than a month and see how many people bother to contact you. Its scary but when you are no longer on the social scene its amazing how quickly you are forgotten by people you thought you would be friends with forever.

Letting a friendship go is never easy but for me it was a necessity. I could no longer stand being let down when a visit was cancelled at the last minute due to them going out with other friends or realising after a small experiment that if you didn’t actually text them it would be 4 weeks before they noticed. Friendships cant be forced and they don’t recover after events like these.

So to sum it up I haven’t been blogging because I’m terrified of actually expressing my true feelings anywhere. It seems I must paint on a sunny smile whenever I express myself to people outside my family or two friends in the fear I may depress other people. Well on my blog I say to hell with that. You the readers have a choice to read or not to read, over 5,000 of you have chosen to read. I think that speaks volumes.

So now I am off out into the garden to enjoy this brief spell of sunshine, have a good weekend xx