Monday, 19 September 2011

Life, love and work

Well it's been over a year since I last blogged apparently! The main reason for that really being that life has been moving on and strangely one of the things I still find the most tiring is looking at computer screens/TVs. So I'm not sure I'll ever be able to be a frequent blogger but it's still fun to post the odd note and see how everyone's doing.

Much has happened since I last wrote. I met a lovely man a year ago through eHarmony of all things! I honestly wasn't expecting online dating to work I just thought I'd do it for 3 months to help with re-socialising myself after the illness. (Which incidently was ME. I could say 'is' ME as I'm still not anything like up to full health yet.. but I prefer to think of myself as recovering from it than having it as I'm just sooo much better than I was - really now it's just a case of slowly building my strength on all levels.) Anyway, he was willing to drive over an hour to see me from the beginning and now that I had to move for work it's more like 1h30 but this is still no issue and I've seen him virtually every weekend since we met. Now that I can drive again it takes me 2 hrs to get to his (I have to take a break halfway through) but relearning how to drive has been fun... though perhaps not all the tight car parking spaces at work eeshh! Still it's nice to have the freedom.

So in December last year I started working 3 days a week as a contractor. Obviously going back to work was a bit of a shock to the system even after having done charity work and getting my fitness up. I had lots of support from those I love so I was able to make the adjustment ok. My new manager was supportive and allowed me to spread my hours out which helped a lot initially and the fact that the Christmas break came after only a couple of weeks helped as well. So I've progressed through the year and am a lot stronger now than when I first started (though I do keep having to remind myself that!). The main barriers still remaining are bright light/ rapid movement and the fact that every time I try to do any exercise I get too tired not the day after but the day after that. My exercise levels went down to nothing on going back to work because all my energy was needed just to manage the essential stuff. I'm trying to figure out some way to add in something low level enough that I can properly establish it into my routine and thereby have something to slowly build on.

So all in all life is good. Being a contractor means work is uncertain but it has meant I can afford to live off only 3 days work a week so really it has enabled me to go a long way to being back on my feet again.

Hope everyone is recovering well :)

Saturday, 24 July 2010


Hi everyone, it's been a long time since I last blogged and I'm pleased to say I'm doing a lot better these days. I spent about 4 months of last year being entirely bed-ridden i.e. unable to walk more than 2 steps and being spoonfed. All I could do was lie there it was awful! In November I started getting out of bed again and now I am pleased to say I am starting to look for work again, I am volunteering half a day a week and can jog a mile! I avoided the blog world during my recovery because I didn't want to think about illness -I wanted to think about each wonderful new thing I could do, but now I think it is only right that I let you know some of the process I went through and some of the things that helped. Maybe it will be useful to someone somewhere.

Thursday, 28 May 2009

The ball is rolling...

Just a quickie.  Looks like the ball is finally rolling which is exciting.  I will be going to the hospital tomorrow for allergy tests and then again first thing on Monday for a CT scan of my sinuses.  We were quite surprised to only get a letter about that today, but the sooner I have that done the sooner I can get on the waiting list for the surgery so it's good really.  It will be interesting to see what it shows.  Fortunately my dad will be able to be there to help push me around in the wheelchair too, so that's good.

All that activity will probably wipe me out for a while though so it'll probably be another week 'til I can use the computer again.  At least it's for a good cause. :)

Tuesday, 28 April 2009

There and back again... and a solution!

I know Sue has already used this title for a post but it just seems so appropriate (plus I always loved Tolkien)!  I also want to say thank you for your support - it's so nice to know there are others out there who understand the hell we go through!  :)

So much has happened since I last posted that I don't know where to start really.  Things got really bad - I ended up completely bedridden - but it turns out that this was actually a good thing.  My dad called out the doctor and he was rightly concerned, and although he didn't know what it was, he gave me a week of  strong antibiotics.  These had a dramatic effect and had me walking to the loo again by the end of the week.  I also had more fluey type symptoms as if my immune system was actually starting to recognise something was there.  I had a few weeks off the antibiotics (maintaining the same level) while they did some more blood tests for things like lyme and bone cancer.  Fortunately these all came back negative and in order to be strong enough to go and see the ENT specialist I requested more of the antibiotics from this new doc.  

The visit to the ENT proved to be incredibly useful (although he as a person was not not so congenial) because it turns out that my chronic sinusitis is actually caused by a deviated septum.  In fact I do remember the incident, although I don't remember precisely when it occurred: I opened a door rather hard into the side of my nose!  The broken part looks like an aeroplane wing and so produces turbulence in the nostril.  This causes irritation and inflammation which is exacerbated by any allergens, particles or chemicals/fragrances in the air.  The other nostril is also so narrow now that it blocks off easily causing sinuses blockages.  The chronic inflammation and limited air flow to my sinuses allowed a chronic infection to take hold which led to me gradually going further and further downhill.  I believe this was probably exacerbated by my body suppressing the immune system by increasing cortisol levels to combat the inflammation.  

So the good news is I now have a plan to help me recover.  I need surgery to correct the septum and I am continuing with the strong antibiotics to clear up the sinus infection.  Because they don't like to hand out strong antibiotics I have had to phone up each week to say I still have the infection to get more, so it's definitely still a case of being my own advocate.  As I continue to take them I get stronger and am hoping to be well enough to come off them next week.  (I will know when the sinus infection is gone when I stop getting yellow mucus in the morning.)  As for the surgery, I am not on the waiting list yet as I am still waiting to hear from the hospital as to when I can go for a CT scan (to check if my sinuses also need operating on).  I really hope I don't have to wait too long!
Anyway the good news is that I am now able to drink tea out of a mug again and shower every day!  I am so glad for little things!  Of course, it is as always incredibly important that I pace myself.  I strongly believe that the most important thing that we can do for ourselves when tackling chronic fatigue is to rest fully and pace activities (see The Importance of Resting).  I intend to gradually build up what I can do in this way to reduce the likelihood  of the infection getting the upper hand again.  The other thing to consider is that with chronic fatigue (whatever it's cause) latent viruses tend to reactivate themselves (I saw this on the summary presentation of a CFS conference in March that was posted online).  I know this to be true in my case because a year ago I had a blood test that showed my Igg antibodies to Epstein Barr to be very elevated.  I also had shingles at the age of 10, so this virus could also have reactivated.  It is going to take time for my body to get strong enough to get these back into submission and also to get rid of my chronic yeast infection.  I am fortunate though, at least I can get a leg up on it all as I get stronger with the antibiotics.  

Tuesday, 21 April 2009

Too ill to blog...

Dear blog friends,

Jane went downhill and is now too sick to blog for a while.  She hopes to be back blogging again within a couple of weeks and wishes you all lots of good days and marked improvements.  She has been unable to even walk a couple of paces let alone walk to the bathroom and has needed help even to eat and brush her teeth.  The doctor came to see her and doesn't know what it is that is causing this but he is doing a good effort of trying to get to the bottom of things.  Jane has been getting a little stronger each day since starting a week course of strong antibiotics so this is an encouraging sign!  The doctor wants to do more blood tests to figure out what it is an infection of exactly, before taking things further.

Jane says a phrase that has been helpful for her over the last few weeks is "may you have the illumination to see what is, and the hope to see what can be."  

Best wishes to all!