Heavy Cold, Good Sign or Bad?

In case you've been wondering where I've been...I have a heavy cold.
I used to get runny nose, sore throat and it would be mild for a couple of weeks; this was probably the result of an over-active immune system also sending me to sleep 24/7. This is not a mild cold! Hacking cough when I speak or open the front door, nasal symptoms which are a great excuse to use my Kleenex Balsam Menthol tissues, shivers, skin aching...I could go on and on but I'll also mention the right side of my neck has swollen up since last night- it started just behind my right ear and is now in front and down my neck too.
I'm right in line for some great sympathy here aren't I?!

It is probably a good thing, my immune system is working much better, putting all the known (more effective) strategies into place to get rid of this thing as soon as possible. While my husband is a couple of days behind symptom-wise he is currently able to obey some of my requests! He'll be on the sofa or in bed in a couple of days and hopefully I'll be able to answer his beck and call!

This is probably a good sign, my body is fighting a cold properly. If I was fit enough to leave the house and cope with a walk, or a bit more exercise than 20 minutes light yoga in front of the fire, I would probably detox quicker. I'm happy to wait and see what happens, eat nourishing food, drink lots of water and just get on with enjoying some DVD box sets and favourite audio books.

Help Everywhere

I am constantly amazed at how many therapists, doctors, teachers of all kinds are out there offering help to sufferers of ME. All over the internet and in advertisements for massage therapists, yoga teachers, life coaches the helps is there. It is a mind-blowing field of information which can cost a small fortune! Scepticism appears in my mind with so many as ME is a complex illness. Those who have done many supporting studies and have proof of recovery are the ones who catch my interest more.

So many of them are using different approaches towards the same end. The body is in fear, physical confusion and the practitioners help patients find ways of changing these physical patterns. Gentle, kind, loving practitioners offer so much. Some ask a lot of money, some work for donation or offer lower prices for those who can pay only so much, and can run on lower costs due to the charitable foundations attached to the business. 

I have just found a book which is titled "Coping with Chronic Fatigue" I must have bought it so many years ago, because it was at the back of a bookcase and I had totally forgotten that I had it! It talks very simply about these familiar methods and puts it all in about 150 pages. (not a bad thing for people who can't read very often and have bad concentration and memory!) The need for personal connection cannot be put into words. So much of my recovery has been in the need for emotional support. My friends, family, specialists, talk to me on a regular basis, suggest new options... but only when I get to those points, not when I have read 3 chapters of a book in 2 weeks. One-to-one help, or methods with videos and information which can be used only when the next stage is reached, is so necessary. I definitely recommend it.

So why is it working for me now and might take longer for someone using the same methods? 
Firstly I have been using many of these methods for a long time already, they just never had a name or title and doctor attached to them? I know I had to be in the right place, financially and along my life path to benefit to the extent that I have from working with the specialists I have chosen.
I had worked through so many of my symptoms over so many years and found solutions for these. It took much desperation, determination and a lot of tears! If I hadn't done this I might be taking so much longer to recover to the same point as I am now. I am also in a place with a terrific husband who offers me unconditional support with this journey. I do not work, we are fortunate enough to have family and friends nearby who support me physically and emotionally. Without children or pets I can rest when necessary; I can have a day in bed or a lazy day on the sofa, lie in the garden all afternoon if I choose and have a lift to the surgery whenever I need to go. So many things in my life are going right and it is the years of experience with this illness that has given me the confidence to know what is right and make choices in my life to support that experience.

Why... Why...

do we have ME?
ME can be caused by numerous things, mostly physical and mental traumas. The straw that broke the camels back is more usually a virus and serious infection. The physical confusion caused by trying to heal this intruder results in the shut down of all but the most fundamental unconscious reactions, such as breathing and circulating the blood and oxygen around the body. Without the nervous system and stress responses working in conjunction, the healing doesn't take place satisfactorily and the body is stuck in confusion; fight, flight or freeze.

do we have symptoms?
Symptoms are the one way the body has to alert us of danger, something not working properly. A lot of symptoms, rashes or numb toes and fingers, are simply because the energy flow throughout the body has been compromised so severely. Exhaustion and insomnia is quite simply because the body is on such a high alert- def con 1, or tiger in the corner of the room- and this is constant. Physically the systems have forgotten how to recognise danger. Symptoms, light and noise sensitivity, food allergies, chemical sensitivities are there to say "that might be dangerous, be aware because I'm not sure"

Out of Breath

Walking up a few steps, bending down and trying to pick something up, walking and carrying something. Why, oh, Why?

I have to be patient but it is so difficult. All the discipline in the world can't help my disappointment. A hug and reassurance helps and I have to just give into the fact that I just can't do some of the smallest things yet.
I was standing at the hob yesterday, turning over chicken breasts as they sizzled away in garlic butter (a great find in the supermarket making the simplest food that little more interesting with very little effort!). Did I stand happily? Did I need help? was my breath calm and unconcerned. Ummm. I was happy, I didn't ask for help, but my breath was here and there. I noticed how difficult it was at times, finding undizziness(interesting word!) and focus.
I put myself through it to find comfort and normality in life. To achieve little things through the day.
Oh boy.
What will I be when I attempt some stairs?(we live in a bungalow) Currently stairs are impossible. A few steps or a slope have me slowing down and out of breath. I need to practice the yoga, do more around the house, but only when I can. Being unable to do such things without loosing the breath is a sign that I need to slow down, give myself time and be patient.
When the breath speeds up and shows me that I need to step back and find focus in doing less or slowing down a little, I have to accept that- just as I accept any symptoms as par for the course. Symptoms as simple as an uneasy breath are there to show me that my body is uneasy, I have to take note and answer without question. To question takes too long and too much anxiety. I am recovering, I am finding a different way of being and I have to accept how long it takes; no matter how long it takes.

Webinar News

Last night's webinar was, in part, about anxiety. It didn't all fit in with my ideas but was useful in some ways. I take notes through it when something might be helpful to remember, but I have my own take on this subject:
Anxiety in ME patients can be a big thing. Just the tiredness; never ending lethargy, malaise, jelly-like legs, all over physical weakness and cognitive exhaustion from the smallest stimulation, is scary enough. Who on Earth would ever imagine the body would be prepared to act like this? We're humans, prepared to fight, flight or freeze with intention at any threat. Could an ME patient do any of that? No. Being Scared, Frightened, Confused and Anxious is the obvious result. When I had so many symptoms, I needed toes and fingers to count them, it was mind-boggling. My seizures were especially stress-inducing as so many things could set them off, I was on the look out for triggers and how to avoid them constantly. The idea of coping with it calmly is practical: taking a methodical approach and dealing with each flare-up as and when it happens is fine, when two or three appear at once, it's difficult. When you have so many it's confusing and therefore causing headaches and anxiety, the idea goes 'out-the-window'! That's when a deep breath and a listening ear is necessary. And the big thing about this illness is realising when you need help. Be that from friends, family members or even a paid carer or counsellor. The faster you can offload symptoms and worries by talking about them or finding solutions the better your chances of less anxiety.
My anxiety is mainly about what I do when and where and also about a day when I wake up with a feeling of exhaustion before I have even lifted my head from the pillow. I have very little anxiety now, mostly just on bad days as my unconscious brain seems to think it is back in the old days- I have to keep reminding it that actually it is just an off day and it won't last.
When recovery begins it can be really scary to find yourself physically tired from activity. Tiredness has always been a bad thing. I have been getting used to physical tiredness; realising how lovely it is to put my head on the pillow at night and fall asleep because I am tired at the right time! Yesterday I was cautious as I was still lacking in energy, feeling listless, and spent the afternoon in the garden resting with music playing quietly next to me. When I fell into bed last night it took longer to fall asleep, I also woke up at about 5am and was tossing and turning for an hour.
Friends can be so useful in this scenario- distraction is a great way to reduce the stress. Items through the post can be distracting, not because it's a birthday or special occasion, but because you can't be there on the doorstep and want to make an effort. It can be as small as a joke on a postcard or as big as an audio book or DVD set from Amazon as a gift, or from your own collection on loan. Perfumed bath foam or soap is a nice idea but usually not practical as the skin can become so sensitive. Just a phone call, or message left on the answer phone, a text or an email with a funny YouTube link is a distraction and something that can distract over and over again.
One of the best books I ever found to help deal with the stress is How To Be Sick by Toni Bernhard. It helps the mind and body come to terms with the situation and the reality becomes more peaceful. A half-way-house has to be found at the beginning of ME (or for longterm sufferers like myself in the middle of nowhere when the right tools are in situ.). Sitting on the bottom rung of the ladder for a few months to find firm ground is a great stance to take. Once symptoms have abated, which might take a long time, the climbing can slowly begin more securely. But if the heart and head are starting from the right place and peace has been made with the situation, then sickness can become recovery.

What Is ME?

This is a question that can have a very simple answer or a very long winded answer. The simple answer is that ME, Myalgic Encephalomyelitis, it is a chronic neurological illness. Before I boggle your mind with the long winded symptom answer I would like to boggle your mind with an explanation about the title of the illness. Myalgic Encephalomyelitis came about in 1956. It had been recognised as an illness for many years, possibly even centuries, but this was the first time it had a name. Two UK doctors performed examinations and post-mortems and found inflammation of the neck, brain and spinal column; Encephalomyelitis. This name was paired with Myalgic to describe the muscular pain. Some patients may also have different titles for the illness. CFS, or Chronic Fatigue Syndrome, is a title coined in the 1980s by insurance companies in the United States of America. ME was costing too much money and a solution was sought to solve the expense. By coming up with a new title, more people could be described as having the illness and the view could be introduced that psychological causes and treatments could be the only path to take. The expense was therefore handed to another authority and the burden of physiological tests and trials were no longer the first instinct of medical practitioners. Chronic Fatigue is a symptom of so many other illnesses, cancer or liver failure for example and this created a great deal of misunderstanding about the original ME. Many people with CFS have these underlying illnesses that need addressing which can be dismissed; so by being given this title it is thought to be 'all in your head'. Others with CFS should be given the diagnosis of ME and will then, by some doctors, have a fuller and more rounded treatment programme. Of course all of us with ME will still come across doctors, friends, family and complete strangers (even complete health authorities) who will decide that for us it is still 'all in your head'! Other titles for ME include CFIDS, Chronic Fatigue Immune Dysfunction Syndrome and less frequently PVFS, Post Viral Fatigue Syndrome.
So the long winded symptom answer... I will now attempt to explain in depth how varied and wide ranging the symptoms and consequences of this illness can be. It is very misunderstood. As when someone who is undergoing chemotherapy may wear a wig and take great time and effort on their appearance when leaving the house, a patient of ME will only ever leave the house at their best. This may be a few times a week, once a week, once a month, or only ever to visit their doctor for a 6-monthly appointment. To leave the house takes preparation for many days in advance. A wash with a sponge and towel while sitting in bed may happen on the morning of the event. Hair wash may have happened two days before. A very light routine will have been needed for many days, almost as if saving all the energy in advance to be used for this two hours when leaving the house. Many options of clothes will have been thought through for days and maybe weeks, as temperature, weather patterns, comfort and ease of dressing are all part of the process. For this reason the outside world does not see the true consequences of ME. So much of the illness is hidden. What is hidden is how when entering the house there maybe a collapse in a chair, 3hours sleep with hot water bottles, blinding migraines, pain killers taken 4times every day to lighten the joint and muscle pain, with skin sensitivity close to having an annual flu bug on a continuous cycle. Indigestion can be chronic and leaky gut is common. Muscle weakness, including the cardiac muscle, limits activity beyond that which would be restricted by any consequential pain. A lack of sunlight can send some patients into depression as can the lack of contact with the outside world. This only causes more confusion and misunderstanding from those who are around you, as surely depression causes tiredness too, in that case 'you just need to snap out of it!' ME is so different. Anti depressants may give you a better view on life, may help you see things from a glass-half-full perspective, but it will not take away the other symptoms to any great degree. Other symptoms can include seizures, paralysis, low blood pressure, poor blood sugar regulation, hair loss, the list is endless and different for every sufferer. Each one of the symptoms can cause separate secondary symptoms and illnesses causing even more confusion. After such a mind boggling explanation all I can add is that in some ways I see ME as my body screaming at the top of it's lungs in an "I can't cope anymore!" gesture. I just have to learn how to scream right back "I'm not afraid anymore!". Over the years I have found this easier at some times than others and with having had ME for so long I am starting to say it more often and my symptoms are becoming less. It has been a long hard struggle with one thing attacking me from one side while my mind has been occupied with another alien invasion on the other. I have decided to let these invasions float on by and the aliens are starting to find that they need to search for a host who would be more inclined to have a battle.

The Simplest Things...

...Can lead to a few bad days. Or as I prefer to call them hibernation, or not-so-good days.
Hibernation can come about for just a few hours, a couple of days or a few weeks or months. It can be a result of many things. Firstly by overdoing it. Overdoing it, I have mentioned before. It can be seen as a failure, a desire for more when more is just not possible. By fulfilling that desire, hibernation is the result. It can be agreeing to lunch with a friend when you know that bed should really be a more sensible option for the rest of the day, or not cancelling an arrangement because it has been a guiding light for weeks in advance. Sometimes it is actually worth fulfilling that desire or arrangement and as an ME patient that is the personal decision that has to be made. It can bring happy memories- glimpses- for weeks to come, or it can bring about guilt, shame, disappointment and regret. It is learning to accept the result which can shorten the required rest time. This type of hibernation can also be brought about by impulsiveness. I can be impulsive. I expect many people can be. To please a friend or make life easier for myself I will choose impulsiveness over sensibility. It works most times; other times I have to pick myself up, dust myself down (hibernate for a short while!) and start all over again!
Another simple thing can be an unexpected burden. Cognitive activity should not be underestimated in this illness. An unforeseen financial or family situation can use up a lot of energy and bring about hibernation. The main reason for this is the increased insomnia that is brought about (for many sufferers insomnia is a daily symptom). We all have nights when tossing and turning is brought on by thoughts and burdens. For an ME patient this coming on top of non-restorative daytime rest just creates further symptoms such as headaches, migraines, increased pain elsewhere in the body and cognitive confusion beyond belief.
One more simple thing to mention is infections and viruses. The immune system is working overtime in an ME sufferer so an infection of the slightest degree will be fought as soon as looked at and all the energy the body has will go towards this fight. In some cases it is in dysfunction to the other extreme so that colds and flus bring on worse regular symptoms- runny nose, temperature, coughs and indigestion. In both extremes another hibernation is induced. This is unpredictable, totally devastating and most definitely a reason for longer-term hibernation.
We have to accept these interruptions in our road to recovery and even in our darkest stability months and years. The simplest things can lengthen our illness, but they are very difficult to avoid.

Smiling

I am smiling all over my face. Yesterday I found a new place. (hey-they rhyme!)
That new place is belief. Trust that I AM doing the right thing. This specialist is helping me down the right path. His ideas aren't just looney tunes.
For weeks I have been doubting, wondering if it all is a waste of money, a scam to take me only so far- just like I've taken myself in the past. 'why do I need his help, he is no different to any other ME Specialist' I have been thinking.
The difference yesterday was that I found more and more websites, more and more patient recovery stories that have used this path and very similar ones too. I also see my symptoms and reactions to these symptoms, being different.
The basic principle is that this first massive trauma, which for me was the serious virus, has an affect on the body almost like a physical PTSD. I don't have visions of when I was initially ill with that virus, neither do I particularly worry about being ill now. The unconscious brain is battling inside of me. It has PTSD. My flight and fight systems have been on red alert, DefCon 1, for the last 24 years and I had no idea. I knew that when I was quiet, when I had no responsibilities I felt better able to cope with everyday life. Surely everyone feels that? But inside me by immune system, adrenal glands, central nervous system, everything connected to automatic stress responses was over-reacting to everything. It sounds totally looney. How can anyone be in this state and not know it? Because we don't know it. It is inside. It is totally physiological. Telling any sufferer that "it is all in your head" is the worst thing you can do for an ME patient-it just makes us feel even more hopeless-do you really think we've not tried that path? So the issue now is that this is in my automatic nervous system and the unconscious brain's decisions to set it off; my brain has been telling me to keep fighting, keep fleeing, but having no idea about it doing this is the illness, is the problem. This has caused physiological damage to so many parts of my body, all the way down to the core. All the symptoms can be attributed to other issues.
Light headedness, poor body temperature regulation= low blood pressure: Diagnosed, live with it.
Aching muscles, delayed muscle exhaustion= mitochondrial dysfunction:
Diagnosed, live with it.
The list goes on and on. If the local GP, even NHS ME specialists and complementary therapists say, "Oh well, yes, you've got all these symptoms: diagnosed, live with it" you're not going to get very far on the ladder of ME Recovery.
So I am seeing improvement, by following this principle and the tools which can help retrain the nervous system, for the last two months I am becoming a different person. As ever it is slow, I need patience and as I have been ill for so many years it might take a few years still to see a significant recovery, but I know I can get better, I know I am climbing the ladder. I would smile all over my face before I started this programme and I have another new reason to do this now!