Tuesday, 29 November 2011

Hip Gate - Part 2

I’ve had one of those mornings that should really be written off so that I can start all over again. Firstly lack of sleep again last night meant I awoke like a zombie at 6am as I couldn’t bear to lie awake in frustration any longer. I decided to go and bake some cakes however my car barely made it to the petrol station for lack of fuel (because of lack of funds). Then my card was declined (because of lack of funds). Once I got to work, it began to pour with rain so I got drenched getting out of my car. My knee gave way and I sank into a puddle and now I’m pretty sure my left hip has crumbled in the same way my right one did earlier this year. It’s only 9am.
Fan bloody tastic. I know I have said this before but I really don’t have time for a collapsed hip now. I am just starting to get my life back together following my hip replacement surgery in July. To have another replacement, which is undoubtedly the only way forward, would simply be too much to bear. I was hoping to make some decent money from my business over the Xmas period as I am running a stall at a local market (all very festive) and this requires a lot of work and preparation (which isn’t going to be easy with a broken hip).
Having to tell my partner that things have ‘hit the fan’ once again is unbearable. I think we have had enough to deal with so far this year. Why do we keep getting dealt this crappy hand? I want to scream. Of course, it could just be a bad day hip wise, but I have the familiar feeling in my hip that I had before in my right one after it collapsed. If it is the case, I am going to have to grin and bear it for the next few months at least because I need part time work, need to grow my business alongside it, and I have lots to do and focus on. Six weeks recovery at home after surgery is not an option and I am running out of patience and the ability to ask for help. If I am sick of it, no doubt those closest to me are too.
I was really looking forward to Christmas this year. The past couple of years haven’t been so perfect, because of one thing or another, but this Christmas was supposed to be the start of good things for 2012. I want to start thinking about the future, having a family, buying a house and settling into life as an adult. I don’t want to be held back by yet another broken part of me that needs fixing. Why aren’t things ever simple?!
I could really do with someone to talk to right now, a shoulder to cry on. Everything is getting to me and I am sick, so very sick, of being kicked when I am down. Hate to depress you with this rather sombre post, but I know a lot of you will relate to this feeling of being overwhelmed by bad luck. What’s worse is that I actually have something to look forward to this week, a night out with my friends which will be the first in a very long time. I was feeling excited about letting my hair down, catching up with my good friends and generally enjoying myself (and wearing heels). But this seems more and more unlikely as the pain increases in my hip each hour. I will still go, of course, as I hate to let people down but I know I won’t be able to fully enjoy myself because of the sodding pain. And did I mention how much I wanted to wear heels?! My outfit simply won’t work without them so I am taking the approach of no pain, no gain and I will deal with the aftermath on Sunday.
I am constantly reminding people that this is just life and there will be bumps in the road. Things will get better I know, but I wish I could take some of my own advice right now. I am not feeling so positive about the future as ‘hip gate-part 2’ creeps up on me. I will snap myself out of this low point in time (hopefully sooner rather than later as no one wants to be around the girl with a face like a slapped arse). Words of wisdom welcome.

Thursday, 17 November 2011


So tomorrow is the second half of this round of Rituximab treatment. Not exactly like waiting for xmas but I am looking forward to getting it over with. I haven’t felt the best this time round with side effects and fatigue getting in the way of normal life the past couple of weeks. I can only hope it’s not as severe after tomorrow’s infusion. I am not looking forward to suffering of any kind for the next few weeks because I have too much to do. With xmas coming up, work and social events are piling in and it would be great to actually be able to cope with it.
The wrist isn’t getting any better, neither is my sleep to be honest but I suppose I am just used to being knackered and in pain constantly. My mood is low, so are my energy levels. I am currently sponsored by Red Bull, which doesn’t really make a bit of difference. Caffeine rarely helps the situation anyway when its fatigue you are suffering with. I just want to be able to enjoy myself at the moment, smile and really mean it.
I have been keeping up appearances and putting on a brave face but there is only so much of that I can do, as you probably know yourselves. However, as usual my family and my man have rallied round in support and have made things easier but you know me... I hate to rely on others all the time.
I think I could literally sleep for a week. Maybe us RA’ers should be able to hibernate for the winter? Although we would probably awake in the spring as stiff as a board and it would take until the next winter to straighten things out so maybe it’s not such a great idea. Or maybe RA could hibernate for the winter? Sounds like a dream.
In the mean time, I am ‘wrapping up warm’ and getting as much rest as possible, wise words from my Granddad (he’s the best). After a bout of man flu in the house, my poor fella has been suffering for 2 weeks now, I am surprised I am only just starting to see the signs it has clawed its way into my head. Waking up with a head full of crap, achy and generally looking like road kill seem to be the symptoms so far. I just hope it won’t put the nurses off treating me tomorrow; I’d rather not have to wait longer for Rituxumab. Drugs of choice this week are therefore Lemsip, plenty of painkillers and an abundance of caffeine. It’s no pick and mix but gets me through the day I suppose. Here’s to a weekend of wrapping up warm.

Tuesday, 8 November 2011

About Last Night

Last night was one of the worst in memory. I have been suffering for a few days now since having the latest lot of Rituximab treatment. I recall feeling a little bit under the weather for a couple of days when I have had the treatment before but nothing like the last few days. It started with a pretty sleepless night the day of the treatment and, feeling fed up the following morning, I tried to busy myself with stuff around the house. Luckily I had the company of my superstar sister who was on hand to play nurse for the day. Even though I couldn’t really rest, I didn’t have much energy either, so my day was spent switching from small bursts of energy to do the washing up or make some dinner and followed by 2 or 3 hours lying on the sofa.
I had some work obligations to do the following day and even though I slept pretty well the night before I awoke feeling exhausted. I managed to pull myself together for the day because it was important, although I am not quite sure how I did it because I was in agony most of the day and on a completely different planet. I battled through anyway knowing that there was a hot bath and bed waiting for me on the other side. I was feeling quite low in mood by the time I got home and definitely not quite right in the head (my brain felt like cotton wool to be honest) but I thought a good night sleep would sort it out.
I battled with sleep through the night again but did manage to get a few hours in between the tossing and turning but when the morning finally came I was definitely feeling more than under the weather. I spent yesterday feeling absolutely horrendous but with no obvious symptoms. I can’t quite describe it, I wasn’t in pain as such or suffering with anything in particular, it was just like I had this big, dark, damp cloud wrapped around me that I couldn’t shift. I ached but not in usual places, my mood was incredibly low (spent the whole day crying at silly TV shows that weren’t even that depressing) and I didn’t have the energy to do anything. Every time I stood up my head filled with fog and I struggled to stand and prepare meals. So I pretty much switched between the couch, my bed and quick stops in the kitchen when I could manage it. All I wanted to do was sleep, but sleep wouldn’t come.
Praying that all would be well once I slipped into the comfort of my bed last night, I took my usual cocktail of pills and waited to drift off. After an hour of tossing and turning, it was clear it was going to be a long night. I hate night times; they are so unwelcoming with this disease sometimes. You pray all day for bed time to come because you are exhausted and then when it finally does, sleep is the most difficult task. It’s like your body plays tricks on you wanting you to sleep at stupid times when you have things to do during the day, yet when sleep is appropriate, your mind won’t play ball.
Last night was horrendous. I can’t put my finger on what was preventing me from sleep because I was exhausted. I had this weird uncomfortable feeling across my shoulders and neck which wasn’t painful just really frustrating. It made finding a comfortable position impossible. So I wandered around the house at unearthly hours, attempted to sleep on the sofa, the spare room (so I wouldn’t wake my boyfriend) and even tried the floor. Nothing worked and the frustration was unbearable. I wanted to scream out for help at one point but nothing was actually wrong, I just wanted so much to go to sleep. I don’t understand the concept of sleep, if you are so incredibly tired then why won’t your mind just let you rest? I don’t think I’ve ever been happier than when I heard my boyfriends alarm go off this morning. It meant the night of pure torture was finally over, even if I still felt horrendous.
Today I am still suffering with my flu like symptoms of having a temperature, aching body, strange tummy and generally feeling like crap. I am so upset because I have work to do and no energy to do it. I need to get out of the house but haven’t the strength or mental ability to actually put that into action. So instead I sit here, covered with a blanket and shivering (even though my house is like a sauna thanks to central heating). The one good thing is that after running out of painkillers at the weekend, I finally managed to get some relief this morning from the chemist. Not exactly a great achievement but for me it’s the best I can do right now.
After not suffering too much with previous Rituximab sessions, I am a little concerned that this is going to be the case from now on. I worry I will have to write off an entire week post treatment because of this frustrating black cloud that swallows me up afterwards. It may be nothing to do with the treatment at all, just a coincidence, but hard to see it that way when it has occurred directly after the infusion. I know everyone can expect side effects following medication but I wasn’t warned about ‘black cloud syndrome’ (as I call it). Another good way to describe it would be to think of your worse hangover ever, double it, throw in some confusion and lack of sleep and then you might know how I am feeling right now. The awful thing is that I didn’t even have the wild night out to blame it on.
So I will continue to plough through the fog that is my day and hope that tonight will bring sleep and tomorrow will be an end to this Rituxi-hangover. Oh and I have the next infusion in just over a week to look forward to. Super. Best not make any plans for the week after that one then...