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How funny is that! I went to see the psychologist for the second time today. And it was a total carbon copy event of the last time. We sat down and within 10 minutes the fire alarm went off and the hospital had to be evacuated. Same procedure as last time. I asked him, if this happens very often and he said, no, this was the second time this year ... and the second time I was there. I think I saw some reluctance in his eyes when he was arranging my 3rd appointment with me. Well, I can't blame him really :-D
He didn't up the dose of the Citalopram. As my platelets are so low, he explained that he wouldn't want to risk me starting to bleed uncontrollably. Apparently, that is a side effect of the anti-depressants. Nice to know ... NOW! Anyway, I will see him again in 3 weeks time. He did mention that he thought I was doing really well despite all the struggles and that my mood wasn't all that low. Mind you, he did get me on a reasonably good day.
Now I am shattered. Two busy days after another has taken it's toll. I think I might even go to bed without my evening fill of the Nomads. Now that hasn't happened for a while. But tomorrow is another day, I haven't got anything planned, so I can spend hours reading and posting.
Number 7 flattened me again. Did the shot early on Friday ... around 6pm. The evening was still ok, the night restful. The morning after ... unbelievable. Every single limb, muscle, bone, joint and sinew aching. My head exploding. My eyes dry and sore, including stye No. 2. My nose packed with blood right up to the sinuses. My throat sore, my glands all around the neck swollen. Every move was a major effort as I was so breathless. Result: I slept nearly continously for 36 hours.
I have lost interest in everything. Just about manage to read a book in between nodding off. Not even sure I understand what I am reading. It's more like occupational therapy. Just now forced myself out of bed and changed the covers. Now running a bath as I have the feeling I stink to high heaven! Plus I am hoping it might do me some good. If not, I just crawl back into bed. And maybe get up again tomorrow.
The ex has surprised me. He has been doing cleaning, cooking, walking the dog and even doing some washing as I write. I must be looking as if I am nearly dead, for him to spring into action. He never says anything, but maybe he is slowly becoming aware that I am ill and not just putting it on. Who knows? I just hope it lasts ... him helping that is, not me being ill LOL.
I so wish I could get dressed up and go out to the park or something. But I just havent got the energy. I look in the mirror and think: "Who is that person?" My hair needs cutting and dying, my face is covered in spots and I have a permanent cold sore and my dark compexion has totally gone. Pooooeeee!!!
I stop moaning now. I know there are people far worse off. My landlady told me yesterday, her brother (around 30 he is) has brain cancer. Shouldnt I be glad to ONLY have HepC?? And there are my friends on the forum, loads of who have it much harder than me. So, I pull myself together as well as I can now.
Cheerio ....
... it is the 23rd April today! Another insignificant few days have gone past. I am so glad I have my friends on Nomads and my daughter on the phone to talk to, otherwise I'd be pretty bloody isolated. I've noticed that I sometimes go a week without saying much more than 'What shall we cook?' or 'Could you maybe get me something?'. Strangely enough, my vocal chords still work LOL
Jessi is waiting for her blood results either today or tomorrow. Neither of us is sure what to hope for. Non-alcoholic fatty liver or autoimmune Hep. I suppose at least with the fatty liver she wouldnt have to undergo treatment. But she is already moaning about all the things she can't eat then. Instead of focussing on the yummy things she CAN eat. I am worried about her, but at the same time I know that I can't worry too much. Life will go the way it wants to go and all we can do is go with it, be aware of what's happening and learn from it. Coincidences are not as coincidental when you really look at them. There is always a lesson to be learned and if we are susceptible to it, it will improve our lives. Well, that's my philosophy anyway.
I thought yesterday that I desperately need to do the Incapacity Benefit form and as I don't feel able to ring them, I though I do it online. I spent the best part of an hour filling the form in before I realised that I was completing the WRONG form. I very quickly hit the exit button, as it was the DLA form, which they just refused me, so I thought they might think I am taking the piss if I send another one :-D So this is my goal today: DO INCAPACITY BENEFIT!!!!! I am so skint that I am counting pennies, because I haven't been paid since January, but I am such a lazy arse doing this sodding form. Somebody kick me up the backside ... please!
Not much to say actually. It was somehow a pretty miserable week, much in line with the previous five. Seem to have gotten rid of the heachaches, so that's a plus. Otherwise not very motivated to do anything again. Slouch mood! My bed is my best friend! Day by day drifts by, nothing achieved apart from another day tx. Well, if that is what it is going to be like until the end, so be it. Life will start at the other side of the 24 weeks.
Forced myself to do a few things today, went to the park with Isis for an hour and shopping. I thought, just in case tonight's injection flattens me again, I get everything I need. Just been to the doc for saliva substitute and more oilatum. Why don't doctors never listen? I said I wanted the stuff to rub on. He said, that he doesn't know if that's prescibable. He looked on his clever screen and then informs me: I am going to prescribe you some pastilles. I argued, that I mainly need it at night and I didn't think pastilles were very safe when you suck them half asleep. He said: Oh, just try them! Wrote the prescription out and that was that! Mind you, the pharmacy didnt have the pastilles in stock, so I have to wait until Monday anyway. I'll just have to put up with my sore mouth for a little longer ... dumbidumbi dum.
Ok, time for food, ribas and shot 6 later. Fingers crossed, the ride won't be too bumpy this week.
How very unexpected, shot 5 flattened me for the weekend. Felt fine Friday evening and almost did a post on the forum, that I always feel fine AFTER the shot. But, boy, was I wrong! At about 4am I woke up with the most excruciating pain in my shoulder blades, my lower back, my muscles were like jelly, sinuses totally blocked, nose full of blood. I managed to crawl downstairs to get some co-codamols. Back to bed and waited for them to knock me out. That sort of worked. But I didn't really surface again until Sunday afternoon. Drifted in and out of sleep all day and all night. Forced myself to get up a few times, because I thought I should, browsed the forum unenthusiatically, and always went back to bed after about half an hour. Didnt even have the energy to care about it. Saturday evening I thought it might be down to the antidepressants that I was so tired. Therefore I took them in the evening since then. Didnt make any difference to yesterday, but today is looking slightly brighter. Oh well, maybe I have to put up with a few really nasty ones. The thought that keeps me going is: If my body feels so crap, I hope the virus feels even crappier and decides to leave. A couple of people on Nomads gave me that idea, and I am grateful. Positive thinking ... it does work :-)
The ex surprised me yesterday. After weeks of moaning he finally mowed the back lawn. Despite it being wet, which was always his excuse. And as he brought in so much grass, he even did the kitchen floor afterwards. And all this on top of taking the dog for a walk AND offering me a couple of cups of coffee. Grand gestures, which unfortunately come too late to make any significant difference. Of course I now feel like I have to be eternally grateful and extra nice to him. Grrrrrrr ....
Well, still sitting here in my dressing gown, but getting dressed now and out with the dog. Looks like I've got a bit of energy and I am not afraid to use it LOL
Shot 5 just gone in. Let's see what happens this time.
Anyway, another let down! Not surprising really, it's me we're talking about. Did I really expect anything different?? Nah! All this talk with the Hep Nurse yesterday, and how great he thought it was that I am taking an interest in my blood, how readily he promised to email the result to me today. Did he? No, of course not. Sent an email this morning sort of first thing, but it bounced back. He had scribbled his email address in such tiny letters, that it was hard to decipher. Anyway, I turned a couple of letters and dots around and sent it again, and it didnt bounce back. So I HAVE to assume he got it, haven't I? Gave him until the end of the day as requested, but nothing came back. And he knows very well, I can't reach him until Monday afternoon now. I think I will write him an email and express my disappointment in no uncertain (but polite) terms. But I am fuming! And I will complain about it all to PALS and MPs, how somebody suggested. At the moment I am collecting evidence ...
Otherwise it was an odd day. A parcel from Werner in Germany arrived with 16 packets of cigarettes! Also the pictures from Malta. Not very good in quality, but a couple of really cute ones of me, I actually look happy and healthy (although I didnt feel it). Wish I had a scanner. Well, I've got one, but I never got it to work. Similar to the many other electrical items I got, which are just gathering dust, because I can't be bothered to read the instructions LOL. So part of the day I was feeling quite 'normal', apart from the breathlessness and the rheumatic pain. Then in the afternoon I started getting hot and cold, my lips suddenly all cracked and generally the side effects came back with a vengeance. Needless to say, I didn't manage to do the many phone calls I should have done. And now it's the weekend. I have yet disappointed myself again, which doesn't exactly contribute to the mood. Antidepressants not kicked in yet. Not achieved the 'no tear' or 'feck it all' stage yet.
Hope I can sleep tonight. Twas dreadful last night. Must have laid awake about 4 hours thinking. Couldnt read, because my eyes were too sore, so there was nothing for it than lay in the dark and ponder. Not very good, when all you want to do is sleep. Well, fingers, toes and legs crossed that it will be better today.
So I went for the psychological assessment yesterday. The nice Dr H and I spoke for about 2 hours ... with a hospital fire alaram and evacuation in between. Gave me the chance for a sneaky fag hehe. All in all it was a good meeting, he took me serious and when we discussed what he would report back to the Hep Team, he said that he wouldnt like to lay my whole life bare, but that he would put that due to my life experiences (yes, we talked about abuse and rapes) I am extremely sensitive to pain of all kinds. I thought that was a very charming way of putting it. He will send me a copy of the report, so I will see what it ACTUALLY says. He assured me that in his opinion I have left the BPD behind me a long time ago and am just battling with coping with this cruel world now, which occasionally results in panic attacks and mild depresseion. Wayyy heyy, maybe I am not so crazy after all. Just a battered and bruised survivor from a bad life. He was also suggesting that maybe some counselling would be good to build my confidence up. When I said, I couldnt afford it, he said there are ways around that. I am meeting him again on 29th April and we will discuss then and see how the 'I dont give a shit' pills are working. At the moment I think they are making me a bit rattley and restless, but hopefully that will settle. Dr H thought they will make me sleepy, but I always react contrary to expectations :-)
Now I will go and sort this Job Centre business out. The cheek of them. Sending me a letter which didnt arrive in time and then saying, that I didnt get the papers back in time. Oh they drive me nuts!!! Luckily I have the paperwork to prove my statements, so I think they will find I am in the right! Or else ....
4 weeks PCR and meeting with Hep Nurse tomorrow. 4 weeks gone already. I can hardly believe it. Feels like I started yesterday. Gosh, how time flies, when you're having FUN!!! Oh yeah, and Mr Hell is in for a bashing tomorrow too. I am getting quite good at this.
I hate him. I hate him. I hate him. My housemate and ex that is! Everything he does or doesnt do winds me up. Like him having a bath last night, then I go downstairs, him having gone to bed, and what do I find?? He didnt wipe the bath out, the sink was full of water drops, the floor was wet and the bathmat still on the floor. Needless to say, I did it. At nearly 1am! Also needless to say, that I was so wound up afterwards, that I couldnt go to sleep until about 3am. Then this morning the usual spiel. He has his breakfast, leaves the house and my work surfaces (they are black) are covered in bread crumbs. Every day I say something, every day he leaves it. And just now, he comes home, I am standing in the kitchen cooking dinner, for both of us mind, and he hasnt even got the decency to say 'hello'. I mean, I have given up on expecting that he might ask how I am. I understand that it's not his concern anymore and that is fine. Errrm, not that he has ever asked me how I was. But these repetitive things drive me absolutely nuts!
So, I am planning the perfect murder now :-)
I was so hoping for a couple of days of respite before I have to stick the needle in me again, but of course it didnt happen. Quite the opposite. I just feel shit, shittier, shittiest. And now I wonder why, because according to my blood levels, which I managed to wangle out of the stupid receptionist at the H/C yesterday, I am ok. I shouldnt be feeling this crap. HB is 13.4, Platelets 158/109 and WBC 3.98. I was very surprised at my Haemoglobin. I am slap bang in the middle of an ordinary female value (12-16 is normal). So why cant I even get out of bed in the mornings. Why do I still feel that I have been run over by a bus and all my limbs are like lead, oh not only the limbs, my eyes, my ears, my all feels like it's made out of unliftable material. This morning another big nose bleed. And another banging headache. Ok, it's a bit better now, thanks the lovely co-codamols, but I also know it will return once they wear off. And I hate myself for just banging on about being ill and feeling like this to everybody who will listen. For pity's sake, I dont define myself through the illness! I have so many talents, so many interests, and I do nothing anymore, but lay in bed and feel sorry for myself. The highlight of my day still being to manage one - ONE - poxy walk with Isis. We used to go out at least 3 hours a day and that was when I was still working. On the weekends I used to take her to Ashton Court or North Nibbley for a nice long walk. Now she just gets dragged up to the health park by me for 20 minutes, and Pete takes her down the Northern Slopes a couple of times a day. Poor thing! And still she is so nice to have around, lies on my bed with me, head on my chest and looks at me as if she can feel my pain. Gods bless her ... I promise I will make it up to her, if I ever get better.
Great, now I sit here pouring with tears again. Dont even know, why I am crying. I hate being like this. I hate not being me! I hate loosing touch with reality! I just hope I can find myself again once this torment is over.
"All Is Full Of Love"
you'll be given love
you'll be taken care of
you'll be given love
you have to trust it
maybe not from the sources
you have poured yours
maybe not from the directions
you are staring at
trust your head around
it's all around you
all is full of love
all around you
all is full of love
you just aint receiving
all is full of love
your phone is off the hook
all is full of love
your doors are all shut
all is full of love!
all is full of love
all is full of love
all is full of love
all is full of love
all is full of love
...
(BJÖRK)
... and this pretty much describes it. Shitty day, shitty life, shitty everything. And no love :-(
... was the reply of the receptionist at the Health Centre when I just finally got through and asked for my blood results. So I have wound myself up all morning for nothing. Typical! Can't do anything but ring tomorrow. Now I am sitting here all edgy with mega fatigue, coz I didnt manage to sleep again this morning. That broke my usual pattern and I am suffering the consequences. I shall have to work at winding down now. Ommmmmmmm ... nope ... that didnt help. Maybe a little lie down in a minute will do the trick.
I have lost the last longish nail I had this morning. The all seem to half lift off the nail bed and being brittle on top of it, the just split of with a nice 'boinnnng'. I reckon I will start wearing thin gloves soon when out in public. My hands look more of a mess than usual. I have always hated my hands and in the old drug days (I am talking mid 70s here) looking at my hands when on Lysergacid could almost bring on a horror trip. Now I dont even need the LSD for that.
In a very grumpy mood now, been shouting at Isis more than usual for picking up and devouring rubbish in the street. Normally I can avoid her doing it, but I have to think 10 steps ahead of her. But I am just not capable of that at the moment, so the little Madam takes her chance at gobbling everything in sight. Arrrghh! So this cycle of events is triggered: she picks up, I shout, she gets even more determined, I take her on a short lead, her stubbornness nearly has me off my perch, I shout, she spies the next edible item, pulls, shout, pulls more, shout more and by the end of the 'walk' we are both so wound up that we dont look at each other for a couple of hours when we get home. Also a way of having peace and quiet ... or not??
No news from the 'Oh-Holy-One'. But I am sure he has not forgotten about me and is plotting a nice surprise as I write. It usually does take him a couple of days to find some kind words after reading what I have written. What will it be this time? Flowers? Chocolates? Diamonds? Oh I cant bear the waiting ....
