Day 19

[Lucien777]

Hi everyone, hope you are all doing good. I haven't been great last couple of days, but still manageable. Felt much better over weekend and then my itching came back on Monday and now my whole face is covered in scaley patches and on fire, lol 😅 so attractive right now! My eyes are so itchy also, but not inside but rather around the eyes where the lashes are. Bad headache yesterday, but still no nausea 🙏 and still sleeping well. So all in all just feeling a bit out of sorts, coughing and my skin is gone completely mad, but luckily I only have it in the face nowhere else, no amount of cream I put on there takes the dryness away and E45 burned like hell. I especially went out to buy some, but ended up using olive oil which seems to help 😌🔥went to see my GP on Monday morning, for something else, and he said I'm taking the piss wanting to do my job on this treatment, he signed me off for two weeks 🙃 in hindsight I'm kinda glad I don't have to worry re.work right now, although was determined to go back this week. I have come to the conclusion that I just need to give in to everyone telling me off for not putting the brakes on and maybe they are right, I just don't know how to slow down 😂 otherwise all in all not such a bad ride, but I'm sure I wouldn't be saying that if I had to go to work right now 😉 hope you are all doing great and catch you later 😎🤗😘🍀🍀🍀 still waiting for VL results 🤤

[navigatinglife]

Good morning lucien, happy you are off work, and that you're getting through it all. Not glad but makes me feel happier to know somebody else has the itchy eye, skin issues. Despite treatment over 6 weeks ago I still have this but not as bad. Lost clump of upper lashes. I use an organic botanical balm, don't think anything takes any of this itching & skin problems away but feels better putting something on it. But nothing other than natural oil/herbs etc. you're doing great, almost halfway? 😍😍😘😘

[Lucien777 in reply to navigatinglife]

Thank you! 😁, not near halfway😆, I have almost another ten weeks to go lol! Yes the eyes drive me insane, I couldn't resist googling and it comes up under not so common side effects of Ribavirin. It seems all I get are the not so common ones 😅 will keep hanging in there, yes my skin just doesn't hydrate I do drink enough, but it's like I always have the dry skin sitting on top of the hydrated skin if that makes sense, it's like lizard skin😂😳. Onwards and upwards eh 😎 hope you are doing fine?! 🙏🌈🤗

[navigatinglife in reply to Lucien777]

Yes mines the same but I had dry skin before treatment due to having hepC. Lots of rashes and allergies also. Joint pain now back. Phoned nurse no response so just having to bide my time for another 2 months. oil, oil and more oil! At least no hair at all on my limbs now so no shaving etc required 😂😂take care 😍😍😘

[Lucien777 in reply to navigatinglife]

Bless you, although no hair on limbs sounds actually quite enticing, no shaving, awesome 😉😅so will you be getting treatment again in two months time? I bloody well hope so!! My nurses are quite good in ringing me back so I'm grateful for that. I used to have the worst joint pain, especially in my shoulders couldn't even lie on either side to sleep, but that's all better now, but not sure if due to being off work or treatment 😆fingers crossed though they will stay away, if nothing else changes and only the joint pains will be better after treatment I will already be very happy 😁🌈🍀🙏🤗

[navigatinglife in reply to Lucien777]

Yes, my jpint pain is back as it was before treatment plus some other symptoms that were due to the hepc and as not all clear feel it could be the virus back at full pace😕no response from the hospital or nurse and it's been over a month since I've seen her. Just seems too coincidental to be anything else but possibly meds? I am quietly getting cross so will keep leaving voice mails. if I have to wait another 4 months or so I will be very unimpressed apart from feeling this bad so quickly. naturally worried & would prefer scans & bloods now not in another 2 months. Apologies if you read this as negative but so dismayed, I could cry but must fight this virus. Yes no hair is great as my legs are itchy without any hair growth aggravation 😁you'll be all good as you're type 1? Keep warm❄❄❄⛄⛄⛄

[Lucien777 in reply to navigatinglife]

That's such bad aftercare, I really hope they sort something out for you asap, I would be very unhappy with them too! 😤 Is there any chance that the virus could go by the three month mark? Even if it wasn't clear at the end of treatment. Why else are they making you wait another 2 months, I don't get it and just reading your post makes me cross with them 😡 I sincerely hope that someone gets back to you, they shouldn't just leave you hanging without any more information, so wrong. I wish I could give you a hug right now!🤗 Definitely keep calling them, someone has to reply they have a duty of care! I worked in the NHS for 13 years, and that's how I know. Good luck with everything, try and stay positive, we are all rooting for you, please message if you ever need to talk 🙏🌈💪🍀🍀🍀😘 I think I speak for everyone if I say we are all here for you 🤗😘

[navigatinglife in reply to Lucien777]

THANK YOU lucien, comforting to know that. Fought so long &hard to get Dr's to listen then I guess taking my foot off the pedal thinking I would be looked after once in the system proved me stupidly wrong. I am calling as much as I dare as the lack of response doesn't help. think a good sob then watch a comedy film on the cards tonight. 😍😍😍😍😘😘

[Lucien777 in reply to navigatinglife]

I'm sure they will call you back eventually, they have to! Just keep trying, don't care if you spam them lol!😀 It's so much worse when they don't reply, doesn't help with anxiety. Comedy film is a good idea, I'm watching the x-files now hehe, did record a few episodes 😊😎 hope you will have a nice evening, keep warm enjoy your film and maybe a cup of tea and relax, put it all behind you for today if you can ,tomorrow is a new day 😘💪🌅🌈

[navigatinglife in reply to Lucien777]

Yes, on my chamomile tea, watching film about artist margaret Keane. Enjoy the x files ☺ I'm still positive as you say maybe in 3 months it'll show clear. Contact would have helped but of course everybody feels anxious when waiting. Hard to ignore the symptoms but I should know better, so booting it out & strict no sugar, caffeine etc. Love to you 😍😍😘😘

[L444 in reply to Lucien777]

Yes yes that’s the exact word I used to describe this lizard skin lol yuk

[Lucien777 in reply to L444]

I know right, especially with this cold weather, fun fun fun. My lips are peeling too and all around my mouth, beautiful 😂😂😂

[L444 in reply to Lucien777]

Lol between that and the itchy eyes that make me blink maniacally . I look like a mad woman.

[Lucien777 in reply to L444]

Haha I look like that at the best of times anyway 😂😂😂 now it's best I keep of the streets!! Lol!!

[L444]

Hi Lucien glad you off work I have the same skin stuff but all over I too never take off work but with this I have no choice it’s like having some control of your life taken away that was demoralising to me . I tried e45 it burned too . I found diprobase works well no burning how long do you have to take the meds. Well hope your feeling better soon

[Lucien777 in reply to L444]

Thank you, I only have to take them 12 weeks and so have about nine and a half weeks left now. Still waiting for viral load from first blood test, but because I started a few days late, my bloods were already taken after ten days so not sure if they already see anything go down. Next bloods next week Tuesday. Might have to wait until then to find out viral load as they told me they are extremely busy and might not call me with results this week 🤤 I dread to think having this skin stuff everywhere on body, you are such a trooper! 💪 Not long for you now! I wish you all the best!! After all this crap, this treatment better do it's job, then it will have all been worth it!! 🙏🌈🍀🍀🍀 Good thing is my 'tan' has lessened, so I'm happy about that, can't wait for next bloods 😂😂😂

[Lucien777 in reply to Lucien777]

Oh and yes I feel the same re. work, I hate admitting defeat, but I had to this time. We will have to take care of ourselves, it's sure something I had to learn and am still learning right now 💪😎

[Sillysausage234]

👍🙋🏻‍♂️

[Mizzkent]

Aww bless you! I hope things improve for you ASAP! I wouldn’t worry about work right now. Time to slow down a bit and chill.Sending you a big fat virtual hug🤗 and lots of ❤️x

[Lucien777 in reply to Mizzkent]

Thank you so much! 😘

[Hidden]

Stay on the Olive oil if it helps or treat yourself to Burts Bees Vitamin E and lemon oil which is what someone recommended to me, and it’s lovely, smells so nice and can use anywhere as it for babies. Are you still on full dose of the Ribavirin or did they let you drop down?

I’m sailing through since they dropped my dose, side effects not nearly as bad and can work and function again x

[Lucien777 in reply to Hidden]

Thanks for the recommendation, I will definitely check it out! I'm still using olive oil right now lol. I'm still on six ribavirin a day at the moment, still waiting for my vl results from first blood test. They said if I can drop it then only by one tablet a day and they seem to think that it won't make a difference. I have stayed on six for now, so I can see what my bloods are on Tuesday which will be only 3.5 weeks in by then. Don't want to drop them too soon and then having them not work. Also what's the point dropping only one lol. Also signed off work for a nother week so can cope for now 😉😎glad you are feeling a so much better! X 😘🍀🍀🍀

[Cara78]

am so glad your getting time off to look after yourself!