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. :)

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. 

My sister and ME

I mentioned before that my sister was ill with ME when we were teenagers in fact she was ill for 4.5 years in total. She was struck down at the age of 15. She is now 30, has a good job, and finished a PhD last year in astrophysics of all things! Basically she made a full recovery and although her brain fog was severe for a couple of years that clearly recovered too!  

My sister had the classic low grade virus followed by a sharp decline. She was barely able to lift a knife and fork (something I can fully relate to now!) was bedridden and in a lot of myalgic pain. She did gradually improve to a point, although not fast enough to satisfy even the most patient person let alone a teenager. It was a frustrating time. She was lucky because her doctor had a good idea of what was wrong from the outset and, back then (and even now, though less so), there weren't many doctors that took the disease seriously. You have to wonder how many lives have been lost and how much suffering has been caused because of this...  

Anyway she said that she believed that what really changed things was when she spoke to an ME specialist who explained to her how important pacing was. It took her roughly 2 years from this point to recover. She had been resting to some degree before this of course (there is a certain amount that is naturally imposed by incapacitation!) but not efficiently or effectively. It was easy to think it was resting when really it was not because the normal rules just didn't apply any more. I remember her sitting making art using a stapler and a piece of paper at one point because really she just wanted to be doing something, anything, to take her mind off it. I understand this because even now, knowing what I know, I find myself wanting to surf the internet or listen to a talking book rather than do nothing, absolutely nothing.  But, when I did this I was slipping downhill, not climbing up and out. According to my sister having daily rest periods doing nothing is what it takes, so I am determined to exercise my self discipline and really rest properly and, when I'm not resting, make sure that I do LESS than I think I can do. By working well within the body's limitations in this way the body can then use the extra time and energy to work on healing itself.

My sister also cites the story of a friend of hers who got ME fairly recently. Apparently this friend followed the same approach but took it one step further. She is the Queen of carefully scheduled resting I am told! She would rest at set points during the day for set periods of time every day. She is now back at work (full-time) in only about a year from when she first started doing this - making the total severe illness time only 2 years I believe! I am going to get in touch with her soon, hopefully, to see if she has any further tips on getting well.

The other story my sister cites is of the mother of one of her friends who has chronic fatigue syndrome. Every time my sister saw her she would have the ashen cast to her skin and the fatigue was clearly evident but she would still be trying to dust the surfaces, or read a book, or do little things constantly. When my sister approached her about resting her response was 'oh it's only a little dusting'. It seemed that she was unable to change her approach towards what constituted resting or activity. It seems that as soon as she had any energy at all she would use it. Over the same two year period where the other friend recovered, sadly this lady's condition did not ameliorate. Perhaps there are further particulars that I don't know about in this case but thinking about it does encourage myself to rest properly when I don't feel like it!

Aside from resting

From the point of view of medications I believe both my sister and her friend took amytriptolene to help with the nerve pain and sleep problems. I may request this from my new doctor and see if it helps. My sister also went to an accupuncturist to help with the pain so my mum has been taking me there of late and it definitely seems to help with the myalgia.  

Something else I discovered some time back (because of my chronic digestive problems actually) was that taking L-glutamine powder really helped me recover from exercise. I decided to try this out on the fatigue and am finding it extremely helpful. I take 2 grams in water on an empty stomach right before breakfast, lunch and dinner. I believe it is thanks to this that I am able to walk from one end of the house again as I had crashed down to the point of needing support to leave my bed to make it to the loo and having to use a straw to drink (even from a plastic cup). As I have improved the frequent muscle pains have also subsided to an occasional thing. The glutamine didn't help with this immediately though, so it may just be a side effect of general improvement. What the glutamine really makes a difference for me on is muscle strength recovery.

I have also discovered through my own recent experiences that if you do end up inadvertently overexerting yourself if you rest immediately and avoid any further exertion, then the post-exertion fatigue is quicker to recover from than if you don't. By this I mean that although the full force of the fatigue is usually delayed, if you stop and do nothing before it fully hits you then you won't worsen as much. I think that an action done when you have already exerted costs you/sets you back far more than the same action if it was done beforehand. I think of this approach as 'damage limitation' and so I also immediately take a dose of glutamine at this time.

Both my sister and her friend are great examples of people recovering from ME and hopefully will provide some encouragement, but I feel I should mention that I think where there are co-infections and concurrent health issues it can be a lot harder to achieve a full recovery so quickly. In fact I think it is really important to tackle all problems at the same time. I for example I have extreme food intollerances (particularly to gluten), multiple chemical sensitivities, dustmite allergy, concurrent chronic yeast infections and chronic sinusitis. I will talk more about these things at a later point but I do believe that good nutrition and supplementation and listening to your body are vital. I believe I would have crashed far earlier without them. Perhaps this seems a little confusing because I described my recent deterioration as being acute but I have actually been carefully managing my health problems for a long time now in an attempt to have a semblance of a normal life. But then, it seems, the illness won. I will explain my disease progression in a new post soon.

Acknowledgement

One of the most difficult things about chronic illnesses I think can be acknowledging and accepting just how ill you really are.  Today I am forced to do this.  Today my illness cost me the job I really wanted.  The job in Switzerland that I mentioned last time.  The job that would have (amazingly) required the complete combination of education, experience and skills that I have acquired to date.  A job that, although unusual, would have been challenging and stimulating and even well paid.  

Somehow it is losing something I never had that forces me to face my reality.  A world where in all likelihood I will be unable to work even part-time for at least 6 months, perhaps even a year or more, even if I rest intensively.  A world where I have to learn to be grateful for each small improvement that I make, where I must appreciate the little things around me, like the sun breaking through the clouds or the time I get to spend with my family, if I am to be happy during this time.  

So what happened?  Well I passed the telephone interview stage and was put through to the assessment centre which was to take place in Zurich.  Unfortunately for me the assessment centre they wanted me to go to was just one week after the telephone interview - nowhere near enough time for me to recover adequately.  I told them that I was unwell so they decided they would need a doctors note to say I was fit enough to be there - of course I wasn't fit enough to go anywhere, I could barely walk from one end of the house to the other let alone trundle a suitcase onto a plane!  They said they would see if they could put me in to a later assessment centre.  Today I discovered that this will not happen.  It seems that by this stage I was competing against only one other person and unfortunately not only did that person pass the assessment centre which I could not attend but they also must have accepted the job offer.

I am bitterly disappointed of course.  How could I not be?  But whether I like it or not this is probably for the best.  If I had been put through to a later assessment centre and been well enough to go, it would doubtless have set me back dramatically.  How can one go from not being able to tolerate any light or noise to suddenly flying to another country and doing an intensive day of testing and interviewing without consequence?  I was naive I know, but at least I tried, and I tried in a sensible way.  

The importance of resting

There is so much to write about and a limit to how much I can do each day, but before I give you too much background information about my own condition I want to emphasise how important resting is.  

I am fortunate that when I moved back to the UK from the US this Christmas my sister and parents recognised instantly (much to their horror!) that I had M.E..  They said to me that it was incredibly important that I rested properly, they were concerned that I would 'fall off the cliff' as my sister had done.  It wouldn't take much for me to go downhill they said.  Basically this was a kind of intervention like you sometimes see on those American sitcoms and I am extremely grateful for it.

Resting does NOT mean watching TV or listening to the radio or even reading a book or surfing the web.  Resting means doing absolutely nothing.  Lying in bed and relaxing and trying to still your mind so your body can work on repairing itself.  If you do not rest effectively, particularly during the initial stages you will reduce your chances of a full recovery and certainly lengthen the time it takes.  If you don't believe me check out this link, it may scare you in to resting properly when you realise the consequences of not:

http://www.ahummingbirdsguide.com/treatingme.htm

I must confess I did find this concept of resting rather hard to do to begin with - because it is so boring and so frustrating to be ill!  But if you do not give your body a chance you do yourself a disservice.  I limited my activity as had been suggested and rested every day for several hours but I still seemed to be slipping downhill.  

Then there was a job I particularly wanted to apply for (that doesn't start until Sept) so I worked a little on this application each day, conscientiously managing my resting and working time.  Unfortunately when I submitted the application I discovered that there were also aptitude tests I must complete that day!  This added exertion when I was already exhausted made me nosedive.  I could no longer go for short walks with my parents and I discovered that lifting things like saucepans, or the kettle were now impossible too.  My mum has ended up having to cook all the meals now as there was no way I can help, even by chopping up veggies.

Anyway, I made it through to the telephone interview stage.  By this time just this afternoon event was enough to send me through the floor.  The following day I was in a lot of pain and unable to do anything at all - I didn't realise how lucky I had been that I didn't have constant nerve pain until then.  That in itself is an incentive not to push things if you don't (or even if you do) have it already!  Since the interview we had to switch to plastic plates, bowls, cups etc. because I cannot lift the normal ones and I cannot tolerate the chinking noise of the cutlery on porcelain.  Certain lights are never switched on due to my continued light sensitivity and I have even been struggling to walk down the corridor from my bedroom to the kitchen.   All of this was despite me resting properly -now of course though I rest for longer periods than I did.

Thank goodness my parents live in a bungalow is all I can say!!

Why blog?

I decided to start this blog because at the moment I am very ill, in fact my health has been doing a bit of a nose dive!  I think it is important to maintain a cheerful and positive outlook and so I thought that writing a blog will provide a reminder of how far I have come as I start to get better.  So it provides a sort of benchmark if you like.  I have also discovered lots of little things that help me with various symptoms and it will be good to note them down - perhaps they will even be of benefit to others?  I will explain more as I continue with this blog, for now I must go and rest.  Before I go, I just want to say that if you too have this debilitating condition (Myalgic Encephalomyelitis) know that you can get better.  My sister had it over ten years ago now and made a full and complete recovery.