Living Without HepC

I have had a shortened work day as the office is closing early for Christmas. I find I am so tired this week it was hard to keep going throughout the few hours I was there. I was certainly keen to come home and just REST. Sitting quietly with my eyes closed. I think I spent most of the late afternoon and early evening like this. My mind feels lively enough, I just do not want to open my eyes and move.

Although it is not physically uncomfortable (except for having my eye taped shut at night) I am struck how much this Bell’s Palsy has left me very TIRED.

I have been spending time sitting in a darkened room with my eyes shut for long periods of time - and keeping my shades on. My eyelid doesn’t want to blink and the tears constantly roll down my cheek. I don’t want to look at a TV screen - too painful!

Also painful are the nerves behind my left ear - where the inflammation is. It isn’t too much to bear - but it does get irritating after it goes on hour after hour. Paracetomol doesn’t touch it and I didn’t discuss taking any stronger medication during my consultation on Monday. So, it’s grin and bear it.

I think the paralysis has now stopped developing - that is, nothing on my face seems to have drooped any further and the paralysis around my mouth has stopped short of the drooling stage. Further confirmation in my mind that I don’t have too serious a case of Bell’s Palsy.

I spoke to Mynurse who is now back from her holiday. The results of the blood tests I had on Monday were back. The haemoglobin levels that Mynurse had wanted to monitor more closely are ‘low but holding ok’ at the moment, at level 12. Platelets are steady at 1.29 and white blood cells back to normal. Neutrophils are low but steady at .9.

(According to the Multiple Sclerosis Encyclopaedia, neutrophils are a type of white blood cell or leukocyte which form an early line of defence against bacterial infections. They are most numerous type of leukocyte and belong to a group called phagocytes. They are part of the innate immune system and are involved in the inflammatory response, killing the invading bacteria and other noxious substances, usually dying in the process themselves, by engulfing and digesting the “enemy” cell.)

Mynurse was concerned about my Bell’s palsy and will report my experience to the drug company - she has had one previous patient who also contracted Bell’s Palsy during treatment.

Today is a work day for me - 3:30 to 10 pm, and I am aware I have been hiding away for the past two days. It is time to face the public at large and go to work. In addition to the wrap-around sunglasses I have also taking to wearing a hat with a very large brim which shades the glare from any overhead light. But, to go to work I decide I to wear a black eye patch carefully selected from the range of eye patches (black or pink) available at the local chemist! Under this, my eye has been taped shut with micropore surgical tape.

I read on the Bells Palsy website not to underestimate the effect of this paralysis on one’s self esteem. One simple sentence but it says a lot. I almost can’t believe how vulnerable I felt when I had to face people in the office - who were very sympathetic and supportive I might add. I also couldn’t believe how vulnerable I felt answering my first telephone call from someone wanting to arrange counselling for themselves. I could hear a slight ’slur’ in my voice - like that after coming from the dentist when your mouth is still frozen. “This person will think I’ve been drinking.” But my head also told me that a stranger would not likely notice any difference - it is only me being sensitive to changes.

Not a ‘big deal’ all this, but I am struck how deeply uncomfortable I felt and how I couldn’t just shake off the feeling of vulnerability that came with it. And of course, every time a colleague saw and asked what had happened to me, the subject was back on my mind.

By the time I got home I was very tired, although I found my eye less physically tired than on previous evenings. This was probably due to it having been taped shut for the majority of the day.

I am finding that going to sleep with my eye taped shut a very uncomfortable experience generally. It can feel very trussed up and somewhat scary. However, the risk that I might sleep with my eye open and get some foreign substance in it is too great, so I conform with the advice to tape it at night despite the discomfort. I am also finding the tape leaves my skin sore when I take it off, so repeated applications are bringing skin irritations. I will be glad when I can give up this nightly ritual!

I have discovered that my sleeping problems of the past few weeks can be neatly solved by taking two Paracetomol before retiring to bed. This somehow takes the edge off the chemical ‘alertness’ and I am finding I awake feeling rested in the morning.

8 am and a cold, dark gloomy Monday morning rush hour. I set off wearing one of Phil’s ski hats to ward off the cold from my head and my wrap-around dark glasses to protect my eyes from the light - and me from the stare of other underground passengers. I did feel slightly paranoid, with my crooked mouth and nose, and dark glasses covering the droopy eye and non-blinking eyelid.

Ben and I encountered Giles in the small gardens in the square opposite the hospital. He was just taking a break after his last patient - someone who had flown in from abroad for a consultation with him. After a brief catch-up on mutual family news it was off to the consulting room in the hospital.

Dr Giles Elrington is a Consultant Neurologist; it was him I contacted on Saturday. Our families have been good friends for years. He immediately offered to see me for a consultation this morning and I gratefully accepted.

I felt very vulnerable and worried. Giles was very thorough in his consultation and reassuring in his approach. He soon ruled out anything more serious than Bell’s Palsy and we discussed the implications for my interferon and ribavirin. I was relieved to hear there are no indications I must stop the treatment. He outlined the possible medications that could be prescribed and also studies that show outcomes for patients taking no medications are very similar to those that do. I felt comfortable with my choice of not having more medications in me at the moment.

Although he said nothing to indicate this, I suspect my case of Bell’s Palsy was not the most impressive seen by Dr Elrington and that he doesn’t usually have consultations on neurological conditions as mundane as Bell’s Palsy! However, I found this both reassuring and supportive - as it gave me a chance to gain a more objective perspective on myself and my situation.

No reason to assume permanent paralysis - it will disappear by itself in a short time. Not a serious case of Bell’s Palsy. Not a direct side effect of interferon and ribavirin. Don’t have to stop taking the interferon - the next injection is due today.

Later at home, I decided that my sense of all this is my immune system is under some stress at the moment due to the interferon and I have suffered an opportunistic infection which I might otherwise have been resistant to. So, it is another aspect of my HepC treatment journey.

My interferon injection went uneventfully. I did take off the wrap-around sunglasses just long enough to sort this out. I discover that my eyes are too sore to watch TV or look at a computer screen – the light leaves after-images on my eyelids.

Today I am finding ways to live with my face. Carol helpfully pointed out my wrap-around sunglasses will protect my eyes from the glare of light. You thought I was going to say she had pointed out she had been finding ways to live with my face for years, didn’t you? No, it’s more helpful advice from the Bell’s Palsy Information Site.

I did look at this website myself and it makes sense of the symptoms I am experiencing. Looking at the causes of Bell’s Palsy I can see this fitting my situation - ‘the potential triggers appear to be related to conditions that affect the immune system’. Well, mine is under massive attack right now. They also cite Bell’s Palsy being quite common amongst the HIV population, again challenged immune systems.

Carol got me some artificial tears from the chemist and found the microwaveable ‘wheat bag’ to provide moist heat on my neck - both giving welcome comfort to the new side-effects. So I have been walking around indoors on this gloomy winter’s day looking very cool in my shades ….

At the moment I think I am coming out of the initial shock of having yet another ailment and moving into feeling outraged that there is more to contend with. I think anger is the healthiest response I can muster at the moment.

This afternoon, however, we enjoyed a seasonal pastime - we put up the Christmas tree. A smaller tree this year, with roots in a pot. We decided this would be environmentally friendly as we will put it in the garden afterwards and plant it in the spring. As ever, it was fun getting out the favourite decorations we have kept over the years. I am sure it took hours to do all this as I am definitely slower than usual. After the task I took myself off for a half-hour nap.

Tomorrow I am setting off to meet up with Ben who will accompany me to the hospital for my monitoring blood test on my haemoglobins and to see a neurological specialist about these recent symptoms.

Well, not so much of the ‘interesting’ and ‘adventure’ today … more shock or trauma, really.

I awoke with the same problem with my eye. Carol pointed out my right eye isn’t blinking slower, it’s blinking more rapidly. I had thought it was slower because I could catch sight of my eyelashes sweeping up at the end of a blink - which I don’t normally see and hence assumed it was therefore slowed down.

In fact it is my left eye which is not blinking properly - and my right eye is blinking like mad to compensate or stimulate the other one. My left eye feels stiff to close and is leaking tears.

And the muscles around the left side of my mouth now feel ‘frozen’ and awkward to move.

I telephoned the hospital and spoke to a gastroenterologist doctor on duty (no hepatologists available on the weekend) who said it doesn’t sound like a side effect of the pegylated interferon but a general medical condition.

I felt a suspicion and disbelief. It is Saturday and medical services are over-run, under-staffed and inexperienced. And he wasn’t a hepatologist, so would he be familiar with the side-effects of interferon?

However, after a telephone call to someone whose medical expertise I do trust, I accept that it may well not be a side-effect but could be Bell’s Palsy - a condition I have heard of but about which have no real knowledge. I also accept I need specific medical advice for this.

I think overwhelmed is the right word to describe how I felt. I am already coping with a chronic disease, serious medication for it and a number of distracting and disturbing side-effects. Now, on top of that I have another illness simultaneously. It is all too much. While I walked about the house doing everyday things I kept thinking I could now have permanent facial paralysis. I will look ‘funny’ not just for the short term but possibly forever.

Carol checked out Bell’s Palsy on the web. I couldn’t bear to look and face what I would read.

I should say I have not already decided that I have Bell’s Palsy - even before I have seen a doctor, but I have to accept my collection of symptoms does seem to fit this condition, making it a likelihood.

I realised the pain in my neck which I reported last Monday (thinking it was from Yoga or another side-effect) is near my left ear. Carol pointed out that there are facial nerves near the muscle which was sore (and continues to hurt). I also realised I cannot move the muscles in my forehead above my left eye. Carol says these are all the things described very clearly on the Bell’s Palsy Information Site website.

Carol gave me a Reiki treatment this afternoon and afterward I felt more centred and in touch with a different perspective on all this. Yes, this isn’t a part of my treatment journey but it certainly is another feature of the journey I am on. I could have done without more difficulties - but difficulties I did expect to have to deal with and here they are!