Thursday, 31 May 2012

Can I still look forward to the future?

This post is quite a scary one to write. I’m a little hesitant to put such personal feelings in a public place but this is what I wanted the blog to be about so I’m not going to chicken out when times get tough.

I haven’t felt up to writing anything for the past week. I’d felt myself starting to slide downhill but thought I was staying on top of it, feeling a bit down after everything that’s happened is to be expected after all isn’t it??

Well everything caught up with my on Sunday and I had a bit of a meltdown. We’d spent the day at my beautiful goddaughter’s 2nd birthday party and then met a few friends at the pub. I’m not going to lie, I probably had one glass of wine too many in an effort to relax and enjoy myself and the floodgates just forced themselves open.

Whether sparked by spending time with my lovely “normal” friends, being signed off work for yet more weeks, or just everything finally coming to a head and being so fed up of constant, constant pain, once we got home I offloaded all the feelings I've been trying to protect my family from onto my boyfriend. I don’t know what got into me but at that exact moment I hated him for being well and not being able to take some of this away from me or understand it properly. He did his best to be patient but the more he did the more I pushed his buttons. I said some things I regretted instantly but I couldn’t stop. I know I’m angry and that I’m entitled to be but I that doesn’t make it ok to hurt him.

It got to the point where I felt completely trapped and overwhelmed that I couldn’t see anyway out other than to leave. So I walked out. He called my mum and I spent the next hour or so walking around in the dark trying to work out where I could go just to get away from everyone and everything. They eventually found me and talked me into going home but the whole experience has made me question myself and my life.

All I’ve ever wanted is to get married and have a family. I’ve found the man I love and was looking forward to the life we were going to have together. Yes, I was diabetic and that was annoying, but it was manageable, but now, well now I’m questioning whether thinking I can still have all that is just selfish.

It’s not the possibility of passing either condition on, there are relatively low chances of that in either case, and anyway, there is no history of either disease in my family so what happens, happens! But it’s whether I can live with forcing my future family to have to deal with what is going to happen to me.

I have two completely unrelated auto immune conditions to deal with. Clearly something in me isn’t wired correctly. My diabetes was manageable but all consuming even by itself, but now on top of it all, I’m in pain, physically and mentally exhausted and if I’m honest pretty depressed. I can’t help but think that whatever can go wrong, will go wrong.

I have seropositive RA and am also positive for anti-CCP. Being positive for both of these things can be indicative of a more aggressive/degenerative RA. This single fact terrifies me and keeps me awake at night. On top of trying to get my head around this emotionally, I’ve had to reduce my prednisolone dose to help control my diabetes and as a result the pain in my wrists and ankles has increased and is constant. The only pain relief that was working had to be stopped because it caused me problems with both my digestion and feeling frighteningly “drugged”, like I wasn’t myself. I just can’t get away from it for any amount of time in order to process everything that’s happened with a rational brain.

Both my boyfriend and I lost our fathers in the last few years. I know first hand what its like to watch someone you love be in terrible pain and deteriorate in front of your eyes and how it effects everyone else involved. I don’t want to be the cause of any more pain for everyone. I know this all sounds very dramatic and I’m not under the impression that I’m going to drop dead in the next few years but I may deteriorate and I may end up with significant disability. How can I ask someone in their 20s to commit to that?

Since Sunday we’ve talked, a lot. I’ve asked him to leave and told him that I would understand because I don’t want to ruin his life. He gets angry at me and says that he loves me and being with me is his choice and I should respect that. I am just terrified that one day I’ll see the regret of this decision in his face.

This whole situation is just so unfair. I just wish there was a way to know how it was going to play out and what kind of life I'm going to have. Or failing that, I just wish I could stop hurting for one day and be excited about the future again.

Tuesday, 22 May 2012

The Rock and the Hard Place

It's currently 2:23am and I can't sleep.

I am facing a now familiar quandary, do I take the strong pain killers that make me feel seriously rough and slightly mental or do I just lay here and try and wait out the invisible torturer who's currently pushing sharpened pencils through my wrists, elbows and ankles???

Decisions, decisions .....

Sunday, 20 May 2012

Managing Expectations

I have neglected my blog this week due to the fact that my hands hurt and I came down with a stinking cold which I now seem to have broken the back of.

The cold delayed my starting the Sulfasalazine, purely because I couldn't face getting up and dressed on Monday to pick it up from the chemists. But I started on Tuesday and can happily report that I haven't experienced any nasty side effects to date, although I'm still only on the quarter dose that will build up over the next few weeks.

I had one of my regular reviews with my diabetes consultant on Tuesday and actually think it was better that I had the opportunity to discuss everything that has happened with him before I got started. He is a fantastic consultant who always manages to make me feel like we can face anything. I had hoped that he would reveal an extra-curricula interest in RA and would magically be able to provide all my care but sadly not! He is however very knowledgeable about the drugs I'm facing so I am confident that he will be able to manage the integration of my RA into my diabetes treatment at least.

He looked genuinely sad when I told him about it all. It just reinforces what a good consultant he is as he sees me as a person, not just a record of out of range blood glucose readings (BGs)! Anyone living with Type 1 diabetes will know it is a full time thing to manage it successfully. Right now I'm not sure I have the strength to give it the attention it demands. Its so reassuring to have a consultant that understands this and cuts you just enough slack to take the pressure of without giving you free reign to ignore it and put yourself in danger. His main concern is the steroids I'm taking as they increase BGs and then make you eat like something possessed on top. But for now we've just agreed to manage the extra BG spikes as best we can until the RA has settled down a bit and then can start seriously thinking about stopping them or at least reducing them to a more natural level.

Insulin pump and cannula
He did gently drop in that my diabetes regime will probably never return to "normal" again as anything that causes you're body to have to work harder to maintain itself (ie. illness, injury, pain, emotional stress etc) causes changes to the amount of glucose and therefore insulin required by the body. As I'll have some kind of permanent immune system activity happening from now on, with varying pain, I'll most likely have to re-configure all of my daily insulin requirements ... from scratch. This means figuring out what teeny tiny amounts of insulin my pancreas would have excreted during rest periods (before it went on strike!) and programming my insulin pump to do it instead. There is no magic lab test for this. It involves a lot of finger prick tests throughout several days and nights, a lot of maths and mostly a great deal of trial and error and luck. Having been through this when I first went on the pump, I can honestly say I am not relishing doing it again, let alone having to work on stabilising two major conditions simultaneously, with a blip in either one potentially undoing the work done on the other.

I have been at serious risk of dropping in to an "its not fair" funk this week, but I'm managing to keep my head above water by not expecting miracles from myself. I can only do so much and if that means aiming for safe, but not perfect, blood glucose results ... well that will just have to do for now.

Sunday, 13 May 2012

Drugs, Potions and Wizard Spells!

I officially start on my first course of ‘Disease Modifying Anti-Rheumatic Drugs’ or DMARDs tomorrow. After a pretty horrendous week pain wise I’m slowly coming to terms with the fact that I’m going to have to take some serious drugs for the rest of my life whether I like it or not.

When I first saw the consultant he gave me the option of three of these drugs to have a think about.

I started doing some research and my reaction was the same to all of them … err no thank you very much! In my mind Methotrexate was a chemotherapy drug so that was absolutely out, Sulfasalzine might make me go orange so that obviously wouldn’t work for me and Leflunomide would mean I’d have to wait a minimum of 2 years after stopping the drug before even thinking about trying for a baby so that’s a no there too!

After writing the whole batch off, it then dawned on me that it wasn’t the individual cons of each drug I was rejecting, it was the concept of actually taking these drugs … everyday … forever … that I was struggling with.

This might sound strange coming from someone who is already very used to the idea of taking daily medication. (In fact as part of my diabetes care you’re talking more like hourly medication. Luckily my insulin is administered through a pump so a lot is pre-programmed (by me) and doesn’t require an injection each time, but I still have to be acutely aware of what my sugar levels are doing in order to make the many daily adjustments required to eat, exercise, drive, or even just to sit and veg on the sofa as even this have an effect on your basic requirement and has to be factored into the day’s requirements.) But, it turns out, I seem to have a major aversion to tablets.

It’s not the physical swallowing of them or anything like that, but the thought of being tied to a strict schedule FOREVER. Again, I’m aware of the how ridiculous this sounds when I have the discipline to manage my diabetes but am freaking out at the thought of taking daily tablets! But I really am so rubbish that I even had to stop taking the oral contraceptive pill because I was so useless at remembering to take it that I could never have relied on it anyway.

But this is it now. I don’t have the luxury of choice anymore. I don’t know what it is with me but I just hugely resent the fact that I have to take them at a time when ‘they’ dictate! And what happens if I want a lie-in on a Saturday?? That little tablet will sit on my bedside table saying “I don’t care what you want, tough luck, you have to wake up and take me now, so there”.

As you can probably tell I’m not feeling particularly great about everything. Trying to manage an existing condition, process a new, life long diagnosis and make important treatment decisions whilst in immense pain is physically and emotionally draining.

My BF is still being solidly supportive, but I have found myself consciously trying to hide the pain I’m in, or at least its severity, as I don’t want to become a broken record and I know it upsets him to see me suffer. Is been harder these past few days as both my ankles and right hand have visibly swelled and I'm struggling to do things for myself. But I still think when he comes home from work, walks the dogs then cooks (and sometimes even cuts up) my dinner the least I can do is offer him a smile and ask HIM how HIS day went.
As a result I feel less like a walking embodiment of chronic pain and more like the real me!

Continuing along these lines, prior to my consultant appointment on Friday, I decided to give myself a firm kick up the backside and get on making these treatment decisions for myself. I’m fully aware that the choice may not be mine if the drugs don’t agree with me, or that I may end up on a combo of lots of different drugs that I probably haven’t even heard of yet, but for now at least the choice of what to try first is mine.

Leflunomide is still absolutely out. Although we are a little way off babies the 2 year “wash out” period would mean I’d have to come off it pretty much at the same time as starting it which is pointless. One down … Methotrexate is my consultants first choice, however the baby issue does mean that I may get stabilised and then be facing coming off the drug to facilitate a pregnancy which isn’t ideal, also the fact that this drug is an immunosuppressant does make me more cautious as diabetes and serious infections are not a nice combination. So that leaves me with Sulfasalazine.

Now I will just clarify that Sulfasalazine does not make you go orange! This sweeping statement was a convenient way for me to discount the drug when I was feeling a little irrational. Yes it can make your wee a little more colourful (lovely!) and there can be some discolouration in the eyes if you wear contacts, which I don’t, but it is not the equivalent to being tangoed.

There are other side effects which I’ll have to be on the look out for of course, plus an increased chance of it not agreeing with me as a higher percentage of people can’t tolerate sulphur based meds. But it can be used in pregnancy if required and should have less of an effect on my immune system’s ability to function in its everyday job of keeping me well – and clearly it needs all the help it can get!

My BF in his fantasticness has decided that Sulfasalzine sounds like something from the pages of a Harry Potter spell book! In fact whenever we talk about it he takes great delight in casting the Sulfasalazine spell over me with a flourish and flick of his imaginary wand.

We will have to wait and see whether it is the magical solution or not, but for now thanks to him, its name makes me smile so it’s a good place to start.

Tuesday, 8 May 2012

Doggy Duvet Day

I wasn't underestimating yesterday how much I'd overdone it this weekend. So today I am staying in bed with my favourite creatures! They are better for sore, swollen ankles than any hot water bottle I've found so far.

Bank Holiday Burn Out

Having been the cause of several cancelled plans for my BF and I over the past few weeks I was determined to attend the things we had arranged for this bank holiday, all be it minus the usual alcohol consumption and general merriment.

Well, it didn't take long to be rudely reminded that RA is not something you get to ignore for a few days to try and be nice to your nearest and dearest.
Despite the fact that each day was limited to one outing, to a venue where I would be able to sit for the entire time and with maximum pain killers on board, I have felt progressively worse as the weekend has worn on. As a result I'm now aching from the knees and elbows down and have shooting pains in both ankles, several fingers and both thumbs! My wrists, although slightly swollen, don't actually hurt so I'm attempting to focus on this positive .. but its not easy.

I am glad we got to catch up with our friends, I've purposely not gone into a huge amount of detail with the masses about my new gremlin (I dont want to be further known as "the sick one" on top of T1D) but the hugs and words of "nice to see you back out" etc were enough to remind me that my life isn't just the inside walls of my living room! I also have several visitors lined up throughout the next few weeks whilst I'm signed off, which will help break up the daytime telly!

I'm also grateful for the break it has afforded my BF. I'm not sure whether I'm being paranoid or not but I am definitely starting to get the impression that this is becoming difficult and frustrating for him. I don't in any way mean he is being un-supportive, he's not, he is my rock. I just worry that being the primary source of support for someone in constant, unrelenting pain is emotionally and physically exhausting and who is there to support him with that?? Shouldn't that be me? Does it work like that? Can it work like that??

I can't bear feeling like a burden to him. I want to be the fun girlfriend he's used to, the one that sees living with T1D as an inconvenient niggle that cant be ignored but at the same time isn't allowed to impact our life together. But this, this makes me go home early, has me crying in my sleep from the pain and turns me into a bore that just seems to be constantly listing which joints are hurting in that particular 5 minutes.

I have decided to reach out to some people in my local area through in an attempt to find someone of my own age who might understand what I'm going through. My hope is that this will allow me to channel some of my own frustrations elsewhere and help me to feel more like his girlfriend again, rather than his patient. So fingers crossed I get some replies.

One nice bonus of all this is that I haven't woken up each morning of the long weekend with a hangover and an empty purse! Silver linings and all that!

Saturday, 5 May 2012

Preparing for Battle!

I’ve had a busy and therefore exhausting week! Went back to the GP to get my referral paperwork in order, stronger pain medication and yet more insulin as I'm currently using it like its going out of fashion! I also had my first appointment with my new hand therapist.

Apparently I'm very lucky that my consultant has referred me on diagnosis as some people don’t get access to this service until their joints actually start to degenerate?! (It’s one of those things that doesn’t even cross your mind until you’re in the situation but considering she spent an hour telling me how to strengthen and protect my joints to avoid physical deformity, this lack of widespread access is just awful.)

So as a result I’ve been feeling extremely positive about everything. I’ve been diagnosed very early, I seem to have found myself in the care of a great and proactive medical team and my new pain meds have definitely taken the sharp, stabbing sensations out of the pain in my hands, wrists and ankles.

I must confess though to being absolutely terrified of the RA medication I’ll be starting soon. Having had initial discussions about the various options, we have decided to start with Sulfasalazine and see how we go from there. The main reason for this is my BF and I will having a baby at some point in the next few years (after the house and marriage bits!) and the last thing I want to do is get settled on a new regime and then have to rethink everything.

I’ve noticed that throughout my posts I accidently jump between “I” and “We” a lot when it comes to discussing decision making. This is because my family have once again proven themselves to be a source of un-waiving support and to me when I need them most so I rarely feel like I have to make these decisions alone.

My Mum is so obviously hurting seeing me embark on this process of diagnosis/stabilisation yet again whilst she is helpless to do anything to take it from me. Yet she remains endlessly positive and enthusiastic. It might seem strange to find someone being enthusiastic about a new medial condition comforting, but when something like this happens it is all-consuming and can be very difficult to cope with when it begins to slowly drop off other people’s radars. (Don’t they understand this is THE biggest thing happening in the world right now??) But my Mum always wants to know everything that is said by any medical professional I come into contact with. In fact, despite be being 28, she comes to most of my appointments because it seems my information relaying skills are not quite up to her standards!

And then there is my wonderful BF who has been more amazing through this than I could ever have hoped for. I always knew I had found someone very special when I was diagnosed with T1D 6 weeks into our relationship and he didn’t run a mile! He came to see me in hospital when I hadn’t showered or washed my hair for days and still gave me a huge kiss and a cuddle. Not quite the “honeymoon period” that most relationships get to go through! But now, to have to do it again, and with me in such desperate pain, well I just don’t know yet quite how you thank someone for being with you through that.

So I guess what I’m trying to hold on to is, whilst this is most definitely, immensely unfair and utterly terrifying, I am in the best possible place to start my new battle, with the most amazing people by my side and for that I am truly thankful.