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!

Saturday, 4 April 2009

A visit with a "specialist"...

One of the helpful suggestions made by my new doctor last week was to call up the CFS clinic at the hospital to let them know we could come at a moments notice if they had a cancellation. Much to my delight they called up and made an appointment for Friday!  "Fantastic" thought I, "I will finally be able to see a specialist and get the appropriate tests done."  As so often is the case, it wasn't at all what I was expecting...

It turns out that the CFS clinic doesn't actually have a general doctor on staff let alone a specialist!  It is just 'occupational health' people who are there to give you some tips on how to cope with the condition and accept it.  Now don't get me wrong, this is great for people who have a definitive diagnosis and only need disease management techniques, but I do not.  

She tried to tell me that the doctor had done all the blood tests necessary for a diagnosis which I thought was, quite frankly, laughable.  They have done the basic bloods to check liver, kidney function etc. and rule out things like glandular fever, anaemia, diabetes, leukemia etc.  There are however so many other possible causes of chronic fatigue that are not included in these tests that you have to wonder how many people there are out there with undiagnosed autoimmune diseases, cancers, multiple sclerosis, lyme, chlamydia pneumonia, active viruses like parvo etc., even TB or AIDS.  Even my doctor has implied that more tests need to be done before a diagnosis can be made!  In order to make sure they are the right tests he wanted the specialist to do them...  

It seems to me that when working with a public health service like the NHS you really have to advocate your case for further tests and a proper diagnosis because of course they would prefer you didn't - it costs them money.   That's why there are people like the occupational health person I saw, they are there to protect the specialists from being swamped.  

So the conclusion of my visit, because I pushed for it, is that I will be getting a referral to an MS specialist who has also worked with ME patients, and that this new doctor will be able to run the appropriate tests.  

I did learn a couple of interesting things during the meeting though:
1.  Apparently only a small subset of CFS sufferers have the acute intolerances (to food and airborne chemicals or particles) that I have.
2. Most CFS sufferers have a low cortisol (adrenal fatigue) whereas I have high cortisol levels and have been taking stuff to lower them for the last 6 months or so.  The naturopath who discovered this said that my body was producing extra cortisol to reduce the symptoms of a chronic background infection by suppressing my immune system.   By lowering the cortisol levels my neutrophil count went up and my flu-like symptoms got notably worse.
3.  Most CFS sufferers have unrefreshing sleep even if they do sleep through the night whereas, although I had some sleep problems initially, I now sleep well (7-8hours) and I always feel better in the morning and decline throughout the day.

Incidently, this meeting cost me a lot... I went in walking but had to be wheeled out and manhandled into the car because I did not have the muscle strength to stand even with help.  Glutamine supplementation is helping my recovery but I am still exceedingly tired and getting a fair frequency of nerve pains...  

All in all I am very pleased that I got this appointment at least a month earlier than I would have, otherwise I would have been quite frustrated by it.  As it is, it was useful, just not immediately so.   Let's hope the visit to the ENT (rescheduled for the 14th) goes better!