Five months have passed since I began my new diet, but what, if any, effect has it had on my sarcoidosis symptoms?
I have had sarcoidosis for over 15 years now and, although it can affect any organ, the disease has largely impacted on my lungs, skin and joints.
I’ll start with the least. The effect on my joints was really only in my right shoulder which would ache and twinge regularly in the early stages of the disease. However, I haven’t felt anything for many years now, excepting the very occasional slight pain in the same joint.
My skin was an entirely different matter. It steadily became increasingly covered with slightly raised, deep red lesions across my back, arms, legs, face, neck and upper chest. Unsightly, yes, but they never itched, bled, oozed or felt sore. To be honest, if it wasn’t for the fact that I could see them I would never have known that they were there. The consultants at the Royal Brompton Hospital waited to see if the steroids and immuno-suppressants combination would stop the lesions in their tracks.
But they didn’t. So I was referred to a dermatologist who prescribed a course of hydroxychloroquine which worked a treat. The lesions soon cleared up and have never returned since.
Even though anyone would want to see the back of these symptoms ASAP, they were far from the worst. It is the effect on my lungs and my breathing that has really taken its toll.
Like an itch you can never scratch, it is my breathing that has suffered the most. Up until recently:
- I had to constantly clear my throat due to the ever-present tickling sensation at the back of my throat.
- I coughed regularly as my lungs fill with fluid and need to be cleared.
- As a result of all the excess phlegm and sputum that I produced I had to spit regularly to get rid of it
- Every morning was ushered in with a racking coughing bout to clear the build up of sputum overnight.
- At times I could vomit, retch or heave due to my breathing limitations and the sheer weight of phlegm. Cleaning my teeth, eating and drinking could be a painful affair. Even talking could be laboured.
- Any form of meaningful exercise, other than moderate walking, was completely off limits; my lungs simply couldn’t hack it. Walking up any hill or stairs spawned a cloying pull on my lungs so I had to stop intermittently to catch my breathe, cough and spit out any phlegm, and then plodded on slowly to the top. I used to be quite a fast walker but not any more.
- Sleep was broken, peppered with coughing and spluttering.
- Naturally, this perpetual misery gets you down – so much so that I suffered from bouts of depression and, well, morbid thoughts, especially as there is no known cure for sarcoidosis.
My symptoms do vary and the steroids really do help to take the edge off and allow me to function (I am currently downing 10 mg per day). Not normally, but enough to get by. The weather, particularly cold, damp and humid weather, makes it noticeably worse in contrast to warm, dry days which make it a little easier to cope with. I generally prefer the night as my breathing is freer than in the day.
My partner has soldiered on admirably and my kids have got used to my restrictions and bad moods.
But it SUCKS.
Well, not quite. Not yet anyway.
My new diet has had a positive effect:
- Now I only clear my throat from time to time each day and some days I don’t need to at all.
- I cough significantly less than I used to. Mornings are still welcomed with a cough, but it’s usually much shorter and drier than before.
- I hardly ever have to spit now which is a real relief as it is a disgusting habit.
- There is no more vomiting or retching either.
- I can walk at the speed I used to pre-sarcoidosis; in fact my daughter has started to complain to me to slow down as she can’t keep up.
- And I can now tackle small hills sometimes without any real shortness of breathe, wheezing or breathlessness. For longer, steeper hills, I have to stop fewer times as my breathing can cope better with the incline.
- My sleep is so much improved – I hardly ever wake up to cough now.
- My moods and depression, although never ideal and incredibly variable, have ameliorated somewhat.
Better still, I have realised that alongside the inflammation on my lungs I also think I have it at the top of my oesophagus as I can feel it now. Which perfectly explains the incessant need to cough and clear my throat.
The change can be summed up neatly as follows. The other day I was with my son and daughter heading for the bus stop. As we turned the corner, we could see that our bus was already there and would pull away any second now. Beforehand, I would have had to simply let the bus go and wait for the next one in abject resignation.
This time was different. I ran for the bus. Not sprinted. Not scampered. Nor speed-walked or jogged. No, more of a steady run and only over a pretty short distance, maybe 50 yards or so. But I made it and we jumped on to the bus before it took off. Yes I was gasping for breathe like some dilapidated hoover sucking in air. But it wasn’t impossible or unthinkable as before.
This is doubly surprising, bearing in mind that this is all without the “help” of Azathioprine which I abandoned completely back in January.
Going Without Works
So the daily dose of papaya; the elimination of wheat, dairy, alcohol, caffeine and expressly refined sugar; and the cooking everything from fresh, nothing processed does seem to be paying dividends. At least to some extent anyway. It has been worth eschewing takeaways, fish and chips, ice-creams in the park, coffees in the morning, chocolate treats and sandwiches on the go.
Yes my breathing is still impaired. Yes I still cough and spit and wheeze. And yes, I’m not going to give Usain Bolt or Mo Farah a run for their money any time soon. The sarcoidosis is still there casting its spell on me as always. But, perhaps, it’s not quite as powerful as before.
The acid test could be in October when I have my next lung function tests. What will my lung volume be like now? How will my breathing measure up?
And, crucially, will I be able to cut down on the steroids a little?