Peace.........x

Well, hello again!

I haven’t posted on my blog for a couple of weeks, mainly because I’ve been feeling quite tired & had no real enthusiasm to do much other than what I’ve had to do. I’m feeling much more like my old self now though, although the energy I normally have hasn’t totally returned, not by a long shot.

Gosh, so what’s happened since my last post? Well, let me see now………….

I’m now half way through my 9th week of treatment. How do I really feel?? In all honesty, not bad at all. As I mentioned briefly, I’m not as energetic as normal, but am starting to slow things down a little. The only problem with that is that things are hanging around my head for longer periods before I get them done & that frustrates me. I’m not talking about particularly major things, but just anything really. I can have one day where I seem to achieve a bit & then end up doing virtually nothing for a couple of days after.

Take yesterday for example. For me that was quite a productive day. I had a couple of hours in the gym after breakfast, then came home & had my daily bath (using the Dermol emollient & lotion prescribed by the GP) – that took the morning up. Then I met a fellow Hep C forum member for coffee in the afternoon. It was the first time we’d met & we got on really well. She seems to be a very genuine, down to earth person. She started her treatment the week after me & I think we can give each other some good support & build a friendship, which would be nice. Then I did an hours shopping, home for dinner & then out to a friends house for the evening. Got home just before 1am! That’s more typically me, I must say! But today has been a ‘not very productive’ day to compensate!!

Other things that are bugging me (I won’t say I’m suffering, ‘coz I don’t feel that I am) are ………….my rash (although that has vastly improved over the last 10 days since I’ve been using the treatment); this constant dry mouth that feels like sandpaper; the build up of mucous at the back of my throat; the shortness of breath (although it’s not as pronounced as it was; the hair falling out; & just these past couple of days, this constant strange metallic / plasticy taste in my mouth. But as I say, I’m not complaining, ‘coz as side effects go, these are miniscule & ignorable!

The arthritis isn’t doing too bad either. I’ve got another week or so of taking 8mg Prednisolone & then I’m reducing it even further to 7mg. Each month end, with the reduction of my Prednisolone, is becoming a little stressful as I just don’t know how my body is going to react. With arthritis, you can be well one minute, then a feeling of general unwellness can overcome you & within hours you can end up being really ill. Ever the optimist though me…… I will get this Prednisolone down to 6mg & send my rheumatologist ‘over the moon’ as he put it!!

I had a session with my trainer at the gym last week (or was it the week before??) & he’s written a complete new programme for me. I was finding the old programme really tough going with the shortness of breath (oh yeah, I still have that too) & the exhaustion. My new programme allows me to pace myself much easier & as a result, I’m enjoying the gym far more again now. I’m still managing to go to the gym 3 times a week, but what I’m not doing so much now are the dog walks. Events have been unfortunate lately that my friend & I just haven’t been able to fit a walk in & now I’m getting used to the extra rest!!

I found out that there is a support group in existence in Telford, which I never knew anything about. I saw their contact details listed in the Hepatitis C Trust newsletter, so decided to give them a call. Unfortunately for me, they meet once a week on a Thursday afternoon, which means I can’t go as I’ll be working. However, I spoke to a lady called Sally who said that she’d be more than happy to meet up for a coffee, so it was worth the call.

I had a lovely surprise last Monday when I got a call out of the blue from a friend I got to know in Tenerife. He used to frequent my bar & we always got along well. Anyway, he lives with his wife in Essex & has invited me down there for a weekend, which I’m hoping to do sometime in August. I was so pleased to think that he’d thought about me & had taken the trouble to phone me!!

On the subject of Essex, I did go to Essex & meet up with my friends from the Hep C forum. It took me 4 hours to get down there ‘coz the road works & traffic were horrendous, but it was so well worth it. I had such a lovely time & would definitely do it again. So a big thank you to Lynda & her mum for making me feel so relaxed & at home & to Helen for her company that Friday night. I hope I can return the favour sometime!

Raquel (Hepatitis C Trust) is now back to work & just as she promised, has been in touch. I had set a date of Saturday 1st September to do my head shave, not realising that, on 1st October, we have the World Hepatitis Awareness Day (WHAD). So, on Raquel’s advice, I shall now be doing the head shave on Saturday 29th September to tie in with WHAD – hopefully we can get some extra publicity then. I’m frustrated that it’s quite a few weeks away yet (can be a bit of an impatient character sometimes) but I have promised myself that this is the absolute final date now & nothing is going to persuade me to change it. I’ve got to finish preparing my sponsorship form & information & I also want to write a mini-speech to read out in the pub the night that I do the shave. I’ve also asked if the occupational health nurse at work will help me do some health awareness for the staff but haven’t heard back from her yet (I’m afraid she’s another chocolate teapot, but I think it’d be good to have her on board when doing the awareness promotion at work as staff might be more inclined to take notice).

I was looking through Jet Li’s (martial arts actor) website the other week. I found it quite an inspiration. I’ve always been fascinated with the oriental culture etc & reading through his website & his blog, has instilled enough curiosity in me to make me do some research into Buddhism. Now I’m not a religious person. After being forced into religion as a child, I am now quite cynical & after much thought & consideration, would call myself an atheist. However, I am totally intrigued by the principles of Buddhism. I find the fact that it’s more of a philosophy, rather than a religion like I’m used to really refreshing. Buddhists strive for total peace of mind in the acceptance of everything for what it is & I must say that I admire that. I don’t for one minute think I’ll become a totally dedicated Buddhist (even though people have joked with me that shaving my hair is a good start J) but I have already implemented some of the basic principles into my life & it’s definitely made me calmer & more grateful for the blessings I have in my life. I shall be learning more about it over the coming months.

I was going to bring this post to an end here, but (following on from my comments on Buddhism) I’d like to just get something “off my chest”. This concerns the Hep C Forum.

I first found the forum about 9 months ago, not long after I was first diagnosed with Hep C. I was so grateful for having found the forum; I have got to know many lovely, genuinely helpful people through it & have been given wealth of help, support & advice over those months. However, over the past few weeks, the forum [members] in general really seem to have lost the plot. There has been some personal arguments / disagreements / fallings out – call them what you like. I haven’t got involved in any of it. The way I see it is that no-one has ever said or done anything wrong to me & I have nothing against anyone at all. I want to be friends & happy & to help everyone, not argue & fight! Even if a member had done me wrong, I doubt very much that I’d air it in public on the forum! Anyway, too many members have got caught up in the tit-for-tatting & the objective of being there to help, support, advise & befriend each other has gone out of the window. I feel very disillusioned with it now; so much so that I’m seriously contemplating asking for my membership to be deleted & do the rest of my treatment on my own, relying on the few people that I keep in personal contact with to help me. Try as I may, I fail to understand why some of the members have become so angry towards one another. The anger & nastiness upsets me more than I’d care to admit. I haven’t made many posts on the forum since this has all been going on, but have been reading most days. Maybe I should just ignore the forum for a week or two & then go back to it & see how the land lies – yes, I think that would be quite a good move. I’ve always said that if I could have just one wish granted, it would be for world peace, but for now, peace & friendship on the forum would be a fantastic start. Let’s hope I find it heading in that direction when I go back to it (whenever that might be)……….

On top of this, there is a ‘gathering’ of forum members organised in Shrewsbury for next weekend. I’ve really been looking forward to this so much as I really had a fabulous time at the last get together we had. However, with everything that’s been going on with the forum recently, I honestly don’t know if I want to get together with them next Saturday, although I know I’ll probably regret it if I don’t go. I must say though, if I do still go, I’ll certainly be wary of people’s attitudes to each other! I’ll post next week (hopefully) & let you know what I ended up doing.

Anyway, for now, I wish everyone peace, health & love.
xxx

Photos....

I can't seem to download photos from my mum's digital camera to my pc - guess I need to install the cameras software. But what I have managed to do is take some photos with my webcam, so here they are.........

This is one of my injection marks. I didn't have a 10p piece to size it, so a £1 coin has had to do. This is on my middle abdomen.

These next 2 photos are of the rash I mention in my last post. These are of my right thigh.

Side effects & life.........

Hey! All my best intentions of posting more regularly on my blog have come to nothing, but never mind, I’m here now!

Last week was an exceptionally busy & very tiring week. I worked over 50 hours & half of that was quite physical stuff (setting up meeting rooms, greeting visitors etc). for the first time in years, I went to bed at 8.30pm last Wednesday ‘coz I was totally blown out & again at 9.30pm last Thursday. I never made it to the gym at all last week ‘coz of the long hours I had to work & that didn’t help the way I felt generally ‘coz a good session at the gym makes me feel so much better, both physically & mentally. I am finding the workouts much harder now & am starting to pace things slower, but am still managing to get through the majority of my routine each time. I think I find the workout harder ‘coz I’ve generally got less energy & ‘coz I find myself getting short of breath very easily, both of which are treatment side effects which I’m just going to have to learn to live with until they decide to go away.

For all the healthy eating & exercise I’m doing, I’ve still not lost any weight, despite the treatment. My chocolate teapot reckons I will lose some weight before the treatment’s through, but I’m not banking on it, although losing a few kilos wouldn’t upset me in the slightest. I’m weighing in at 59kg at the moment, which is about 9 ¼ stone (3/4 stone heavier than I’d like to be, not that I go by weight as such, but more by how my clothes fit!!)

This week however, is turning out to be a lot better than last & I’m nowhere near as tired.

Did I mention the rash on my arms already? I think I did. It’s been 5 weeks since it first appeared & hasn’t eased off at all. Over the past week or so, it’s spread to my thighs & looks really quite angry & is very itchy. I went to Boots last Sunday & bought some Eurax lotion which is helping the itchiness a bit but not taking it away completely. I find it more itchy at night for some reason. I rang to get an appointment with my GP to try & get something for it but she can’t see me until 11th July – that’s another week away yet! I’ll try to get hold of a camera & post a picture of my rash on my blog for the record.

I’ve also developed a very dry mouth that feels like sandpaper. Seems I can’t produce much saliva at all & so I’m constantly drinking (& subsequently, continually peeing!!) to ease it a bit. I did also have a couple of weeks where my nose was either continually running or blocked, but that seems to be easing off now, so I’ll not dwell on that.

A few strands of my hair have fallen out, but so far, it is only a few strands & has only happened over a weekend, after the Interferon injection. I’ve heard a couple of people say the same about their hair loss too, so I’m assuming that’s nothing to be overly worried about. I haven’t cut my hair in about 8 weeks & it’s growing quite wild but I want to persevere with it in preparation for my head shave. I tried styling it in a Mohican last Sunday & thought it didn’t look all that bad. There’s another photo for me to post, eh??

The other thing I haven’t mentioned yet, are the red blotches which I’m getting at my injection sites. They’re just red blotches, about the size of a 10p piece, not itchy or inflamed at all, just look ugly. They don’t really bother me at all; in fact, they remind me of where not to inject, so they have quite a positive role really! They tend to last a good month before they really fade, but fade they do & I just ignore them. However, I certainly won’t be wearing any belly-revealing outfits at the moment – LOL!

The arthritis is holding up quite well, which I’m so grateful for. I’m now down to 8mg Prednisolone per day which is very positive. My worst fear is that my arthritis will relapse during treatment. At my worst, I’ve been bed-bound, unable to even turn myself over, let alone feed myself or go to the toilet. My current treatment & side effects are so miniscule in comparison to being totally dependent & physically incapable.

I met a fellow Hep C sufferer last Wednesday. He came over to Shrewsbury for a works meeting & as I work in Shrewsbury, we found time to have lunch together. For me, those couple of hours were a complete tonic during a very long & hard week. If he reads this, he’ll know who he is, so I just want to say a big thank you for that lunch & that I really look forward to doing it again whenever the opportunity arises.

I’m off to Essex this Friday to meet up with a couple of ladies whom I know through the Hep C Forum. I’m so looking forward to seeing the both. We’ve become quite firm friends over the past couple of months & I know that’s the way it’ll stay. I’m sure we’ll spend most of our time laughing & that’s such good medicine! I’ll definitely have to get a camera organised to take down with me, won’t I? Unfortunately, I can only stay down in Essex for one night ‘coz I’ve got a friends 40th birthday bash to go to Saturday evening which I can’t miss. (it may well be that I end up having to kick off the karaoke entertainment as the regular guy said he might not make it in time ‘coz he’s best man at a wedding that day! He asked me would I kick off for him if he doesn’t make it in time ‘coz I worked karaokes for quite a few years before I went abroad & whilst I was in Tenerife.

Talking of Tenerife, I went out for lunch with a friend last Saturday & left my mobile at home by mistake. Whilst I was out, my long lost husband phoned & my dad answered the call. Dad refused to speak to him when he realised who it was, so Paul (estranged husband) sent me a text message. He apparently needs some details from me so that he can apply for a divorce. I’ve been asking him for over 2 years to get a divorce sorted & now think that if he can make me wait 2 years to get this far, I can make him wait for the details he needs. I’m not in any hurry to get divorced, so he can just wait, & wait, & wait………. He may well figure out that he can apply for a divorce in my absence & if he does, then I’ll not contest it, but I’ve certainly no intentions of helping him get what he wants!!

Anyhow, I’ll try to post more next week, but mum has found her digital camera & the pc lead, so I’m going to have a play. Back soon (hopefully)…………..xx