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.  

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!

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!

A good week and a decent doctor

This week has been going so much better than last week!  I am so grateful!  Last week I spent pretty much every minute of every day in bed resting in silence just to be able to go to the bathroom and eat the meals my mum made.  It seemed that my condition had finally stabilised... but at a really low level.  Fortunately that is not the case!  

This week I am feeling a lot better am able to walk to the loo or kitchen just fine when needed.  I have even been able to listen to 30mins to an hour of a talking book most days or spend a  

little time on the net with my laptop looking at funny things like lolcats.  It's always good to find things that make you smile.  I am still resting in silence for about 10 hours a day of course and having to use the plastic cutlery etc. but now I can spend time listening to the birds, watching the clouds change as they drift past outside my window, and seeing the new blossom on the prunus tree bobbing around in the breeze.  I think it's so important to take pleasure in little things.  I always loved to draw when I was a child but I was academically inclined and went into the sciences.  Somehow I never really had time for art anymore so now I'm looking forward to the point where I am well enough to sit and sketch or perhaps even try my hand at painting.  

My doctors appointment at the beginning of the week went well.   My new doctor has his head screwed on right and had some helpful suggestions - this is a relief after the last one was so rubbish!  I now have a referral to see an ENT for my sinusitis as well as a couple of weeks of antibiotics to see if they clear up the current infection.  Apparently the ENT can actually flush out my sinuses, something which can really help clear up chronic infections it seems.  I've wished many times over the last 2 years that I could rinse out my sinuses and not just my nose, so I'm really looking forward to hearing what the specialist says.   As I think my sinus problem was initially caused by sieving volcanic ash for a prolonged period without a dust mask (yeah, not very sensible I know!), perhaps it could really help.  I am still waiting to see the ME/CFS specialist to get a definitive diagnosis, hopefully that will be also be in April.

P.S. The photos are from Oregon in the spring last year...

Symptom list

Tomorrow I am going to see my new doctor and so I spent my 'spare' energy this last week putting together a general list of my symptoms in the hopes it will be of help to him.  My memory is so bad these days that there is no way I'd be able to remember everything otherwise.  As I have spent the last 5 years living abroad I'm pretty much working from scratch again here and it's very hard to fill someone in on all this missing information in the stingy 10min appointments that one gets with the NHS.  Anyway fingers crossed it goes well...

Below is my list.  I think it should provide a good benchmark to compare to later as I start to improve.

Summary of Current Symptoms 

Chronic fatigue and miscellaneous symptoms

Fatigue

• General muscle weakness e.g. too fatigued to eat (with plastic cutlery) without taking breaks to rest
• Extreme muscle weakness post exertion (i.e. unable to move arms for a day after lifting something too heavy, e.g. a plate)
• Flaring muscle pains (become increasingly frequent if I start to push my limits or have over exerted myself)

Hyper sensitivity

• Noise sensitivity –very tiring and heightened further during sinus blockages.  High pitched, loud or compound noises are the worst.
• Light sensitivity – as above
• Skin – accidental knocks hurt more than they should
• Dizziness - on going from lying to sitting or sitting to standing (pressure drops).

Cognitive

• Inability to multi-task at all – even hearing sounds from two different directions is too much and tires me.
• Short-term memory recently became very bad – struggle to hold something in my mind for longer than a minute or two.
• Sometimes struggle to put sentences together (use wrong words) and can no longer do simple calculations in my head

 Other

• Recurring lung soreness, sore throat and ears
• Problems swallowing food
• Dry skin getting drier
• Recurring yeast infections

Current Approach:

Extensive rest – currently resting in bed, in silence doing nothing, for 10 or 11 hours a day just to have the energy to get up and eat meals. 

Switched to plastic cutlery so not so tiring to eat. Also use plastic plates, bowls etc. because they are lighter and quieter.  I drink from plastic cups using a straw.

Glutamine supplementation -helps muscle strength recovery and prevents muscle wasting

Prescription antifungals (was nystatin, now diflucan)

Upper respiratory

• Chronic sinusitis (sinuses blockages sometimes lead to migraines)
• Dustmite allergy
• Hypersensitivity to anything in the air – smoke, dust, mold, pet dander, pollen, any fragrances or chemicals.

Current Approach:

Saline sinus rinse 2x daily

Saline drops/sprays for dry nasal passages

Dust masks

House is vacuumed and dusted every 5 days with Dyson

Air purifier in bedroom

Antihistamines – nasal spray helps when exposed to dust, I sometimes take tablets too

Decongestants and paracetamol – when sinuses block off

Supplementation - natural anti-inflammatory/anti-histamine Quercetin, and Bromelain

Immune modulating herbs to boost immune response to infection and reduce allergies.

Anti-inflammatory diet

Digestive

• Food intolerances:
• Gluten – a small amount causes intestinal inflammation that hurts for 3 days (have avoided wheat since the age of 14, now any gluten is a problem)
• Dairy – makes sinus congestion worse
• Sugar – causes yeast infection to flare as well as stomach pain, gas and indigestion (fruit and starches also limited for this reason)
• Yeast – gives me hives
• Salt – makes my stomach lining hurt
• Garlic – indigestion and headaches
• Alcohol
• Sensitive stomach lining – sometimes hurts just to put anything in it, even water.  Taking a couple of pain killers for period or sinus pain always triggers this for a few days.
• Hypoglycemia
• Nausea (worse when sinuses are blocked or draining)
• Old constipation problem returning
• Occasional flare ups of probable diverticulitis (from prolonged bad constipation when growing up)

 

Current Approach:

Careful balanced diet of home-cooked food to control digestive symptoms, hypoglycemia and yeast infection flare-ups.

Supplementation with high quality vitamins and probiotics.