Living Without HepC

Yesterday was an almost unstructured day – doing very little and just what I felt like.

Carol gave me an aromatherapy massage. I haven’t had a massage since mid-December as Carol didn’t advise it during the time the Palsy was developing. She concentrated on shifting the toxins from muscles and joints -
particularly important to help natural drainage of the toxins generated by the medication (as well as other toxins). She incorporated massage of the various acupressure points. It felt completely relaxing but I was tired after it – as she had predicted. No problem sleeping last night!!

I can really recommend massage and aromatherapy to support treatment. I did specifically check with both my Consultant as well as Mynurse beforehand to ensure it would not undermine my treatment – and Carol insisted I did (as a professional she operates to the same standard with me she would with any of her clients). The general view amongst HepC professionals on massage and other complimentary therapies is that these are useful adjuncts to the pharmaceuticals.

I also spent time catching up on this blog. I find that when I have been to work until 10 pm and spent a shift in front of the computer (as well as on the telephone) I am too tired and disinterested to spend more time at a computer screen (so I sit in my chair and think what I would write!) So you may notice that my entries tend to be posted in batches. I also find it takes me some time to metabolise what has been happening with me over the day before I can write about it.

Today is another almost unstructured day. This morning a coffee and a read of the newspaper at Starbucks, followed by a brief sojourn to Gap to look at sale clothing. Everything from last year is too big for me now.

For no other reason than I have touched on the subject of weight just now – I will say that I have gained 3 pounds since I started this treatment on 8 November. I have heard of people losing weight dramatically on treatment and I can understand this! If I lived on my own and had to cook for myself when I cannot find any appetite I am certain I wouldn’t bother. It is hard enough to look at food when you have no appetite or much sense of taste – and then eat it up as it is good for you. I am sure I have gained the weight because I ‘need’ to eat the occasional Danish pastry and other sweeties as my blood sugar levels are low. That’s my story and I am sticking to it (and I can taste Danish pastries!). And over the holiday season, I did eat Christmas Cake, Christmas pudding and chocolates several times!

When I was first diagnosed with HepC I was hovering around 13 stone (182 lbs, 82.7 kgs) in weight – as a result of loads of comfort eating and stress-relieving alcohol. In April 2003 I began a liver-friendly detoxifying diet, for purely health reasons, and soon the weight began to come off. I lost 2 stone (28 lbs, 12.7 kgs) over the next months and by the summer of 2004 I weighed 11 stone (154 lbs, 70 kgs). While I was in Spain I lost another ½ stone and started my treatment at the beginning of November 2004 weighing 10 stone 7 lbs (147 lbs, 66.8 kgs). My BMI (Body Mass Index) is within the ‘Ideal’ category (neither overweight or underweight) according to the calculations I worked out at the BBC Health website

I have read in the HepC information about the importance of weight to successful outcomes in treatment, so I do keep track to ensure I stay in the ‘Ideal’ weight category. Mynurse, when she reads this, will not recognise my numbers – her scales say I am slightly heavier than all this – that’s because I keep my clothes on in her clinic when I weigh myself!

In Gap I was confronted, in front of the changing room mirror, with how ill I look generally, compared to photos taken of me a few months ago. I look tired and puffy around the eyes as well as having the pasty pallor of someone who is ill. Bit of a shock to see – even if it is all to be expected!!

This afternoon we went to Yoga. I haven’t been for several weeks since the onset of the Bell’s Palsy – and was looking forward to it. Yoga usually helps me focus on the finer points of my posture and limbs, as well as providing rigorous stretching and massage of the internal organs. I came back feeling an inch taller, tired and hungry. A good workout – although I did ease up toward the end of the 1 ½ hour session.

Oh the irony! When I read my entry for Tuesday about maintaining a positive perspective …. Yesterday, Thursday, proved to be a most chaotic day – I was all over the place. I had completely lost my equilibrium and still hadn’t really noticed. I felt irritable with just about everything and everyone. I kept encountering situations where people weren’t trying hard enough and it was making me cross. At some point later in the day I realised that these views were based on my assumption that everyone else should be trying hard … because I am! Actually I am trying hard. Perhaps too hard … like “behaving myself” instead of challenging because I might appear irritable, and other such efforts.

And nauseous. Every time I ate something I felt ill – like I might be sick. It also happened whenever I smoked a cigarette. (No, it wasn’t the right moment to think about stopping, but it did help in cutting down.) I couldn’t decide on anything – where I wanted to be or where I wanted to put myself. And distracting …

In the midst of this Carol was trying to book flights to Spain for us, to fit a short, week-long break amongst our various appointments. Last week I found myself mulling over my memories of the sea and sun of Spain and I realised I want to return there soon for a break. It would be such a boost to sit in the sun and warm rather than the gloom of the UK winter weather. So we have arranged to go.

But I did get irritable during the arrangements. Sometimes I don’t realise I am being irritable or aggressive – and it is disarming to be confronted doing it; at other times I can hear it but can’t stop myself. Worse is when I feel it and hang on to it in gloomy silence.

Late in the day I did face up to having lost touch with myself. That began the process of me trying to find my “centre” again. I realised I may be trying too hard to be positive in my attitude to the detriment of what I am feeling. And what I am feeling is largely chemically induced. This may have been just another ‘wrong’ day. I think these are the sort of days other people taking this medication have described.

Today, Friday, is another day – I woke feeling rested and positive about the day ahead. I ate my breakfast with no sign of nausea afterward. No irritations or grumps. A completely different day!

Today it was up early and off to see Mynurse at the hospital. She had called me to ask if we could change my appointment to an earlier time. So, we had made a special point of arriving at the hospital as early as possible – and got there fifteen minutes before my appointment time. I told the receptionist that I had arrived early and could she let Mynurse know as I knew she needed to leave soon. And then she seemed to forget – and I allowed this continue for fifteen minutes before I approached her again to let Mynurse know I was here!

Small thing, but it did irritate me that the receptionist was so inept that she forget to do her job or so rude that it didn’t matter about leaving a patient despite the explanation for arriving early. Why didn’t I say anything earlier, I ask myself. My best explanation is I thought I shouldn’t appear to be challenging, aggressive or irritable – “I was behaving myself”. Why??? It left me feeling irritation I didn’t need and thwarted in doing something for someone else by arriving early. Looking back now, it is also a small indicator that I was losing my sense of equilibrium. If I had been feeling more “centred”, I think I would have recognised that following up the situation with the receptionist was not particularly challenging, aggressive or irritable – and certainly not my problem.

I discussed my Bell’s Palsy with Mynurse, as it was the first time I had seen her since this developed. I could see her checking out my face carefully, looking for the paralysis. I am guessing see she wasn’t very impressed as there were few signs of any paralysis! Actually the nerves and muscles affected have returned to about 90% normal now and I am on the way to full recovery – except for the pain in the nerve behind my ear. For this, Mynurse suggested stronger tablets combining paracetomol and codeine.

It was just over 2 weeks ago I was diagnosed and I had expected this Palsy to last 3 to 6 months. It must say something about my natural healing abilities that I have recovered this quickly – even allowing for the possibility that I had only a ‘moderate’ case of it. I do know it has left me feeling like “the stuffing’s been knocked out of me”. This on the top of the interferon and ribavirin.

We also discussed Week 12. This is when I will have another viral load blood test done – whose results will be compared to the sample taken at Week 0. We set up a series of appointments around this, including changing an appointment with my Consultant, Graham Foster, to coincide with this. I then went to collect my meds and have the standard round of blood tests.

(I will do a separate entry with more details about Week 12 and its significance in the treatment process.)

By the time we got home from the hospital I was ready for a break and spent the remainder of the day in resting mode – this usually means sitting for long periods of time, thinking about loads of things – I write this weblog much better in my head from that chair than I do sitting here in front of the computer!! (And I am sorry you do not get to read some of the interesting points I think of at the time, then somehow forget when I sit here.)

I took two of the stronger tablets recommended by Mynurse for the ache behind my ear – and they quickly cleared the pain, to my great relief. (They certainly did do the trick – I haven’t needed to take any again! The pain has appeared only briefly and occasionally since then I am pleased to report!)

Because it was Carol’s birthday yesterday we had visitors, Ben & Sofia, and we all travelled into town to meet with Phil to go out for a celebratory meal together in the evening.

So, my injection was hurriedly carried out during the afternoon before the celebrations began. Remembered which site – left stomach area, there were no air bubbles this time in the syringe! All went smoothly and quickly before anyone even noticed I had left the room to do the job!

We did have a good afternoon and evening together as a family. Although we were home fairly early I was exhausted. I noticed I was having trouble keeping pace with everyone else as we walked along the streets in town and that I am short of breath when I walk.

When I said to Carol I felt my pace had slowed everyone up she pointed out that not everyone who had injected interferon would have been able, on the same day, to participate in a family get-together, travel into central London and go out for a meal in a restaurant – so you are fortunate to have done this much. There – positively re-framed! I catch myself now more frequently entertaining the ‘negative’ side of situations rather than seeing the positive for myself.

For the past few months I know I have been able to see the positives and it makes me aware that I need to keep working at maintaining my equilibrium as it is so easy to slip into the negative. I believe picking up on these small instances helps me to, well, re-frame my perspective and keep up the positive attitude which is necessary to support this treatment. It would be so easy to slip into feeling “sorry for myself” (for example, that my walking pace has slowed up) and next into being a “professionally ill person” or invalid. I think after that comes “victim” mentality.

I came across the following on the Hepatitis C Outreach Project weblog:
The Answers to “Why Me?”….
A Victim asks how long will it take to feel good.
A Survivor decides to feel good even when things aren’t so great.

A Victim grinds to a halt.
A Survivor keeps putting one foot in front of the other.

A Victim wallows in self-pity.
A Survivor comforts others.

A Victim is jealous of someone else’s success.
A Survivor is inspired by it.

A Victim focuses on the pain of loss.
A Survivor cherishes remembering joy.

A Victim seeks retribution.
A Survivor seeks redemption.

AND MOST OF ALL:
A Victim argues with life
A Survivor embraces it.

Borrowing from this victim/survivor analogy, I think it is important for me to stay in touch with the positive perspective that defines the Survivor! I also suspect this is true for anyone who goes through this long-haul treatment.

Several people who read this blog have commented how wonderful Carol is and that she’s a ‘tower of strength’. I agree. I sometimes don’t say to her how much I appreciate what she does for me and the support she gives me. And I don’t think I have said that in this blog either. She organises and cooks my “liver-friendly” diet and I am always impressed that she knows so much about vitamins and nutrients and what “works” together. She gives me Reiki and aromatherapy treatments which really pick me up if I am low or feeling sore. She has made me a skin cream using essential oils when my skin went dry and itchy. She is knowledgeable and practical – it was Carol who spotted it was likely I had Bell’s Palsy. She takes on extra in our household when I am fatigued, which is frequently. And she puts up with me when I’m irritable.

Although it is me who is the HepC+ patient, I know that Carol is also going through this treatment – it’s not just me. I am very grateful for the support I get from her and delighted it is with her that I can share the pains and joys of this journey. She’s special and I love her. Happy Birthday Carol.