One Year On SCIg

As my one year anniversary on SCIg approaches, I thought it would be appropriate for me to do a post about what life has been like these past 12 months, and how doing my own subcutaneous immunoglobulin infusions (which is what SCIg stands for) at home has impacted my life.

scig

You may remember that prior to SCIg I was on regular IVIg, which I had in hospital once every four weeks, and was truly amazing and improved my life in so many ways.  But you may also remember some of the pitfalls- having to spend one day every month in hospital, having nurses and doctors digging around for a decent vein, bruised arms, headaches afterwards unless I’d managed to drink the required 2 litres of water during the infusion, and of course the inevitable dip in my mobility and increase in symptoms in the last few days of each month before my next infusion was due.

Well…with SCIg, there is none of that!  It’s been fantastic.  I used to have 80g of Privigen every four weeks, so initially I was started on 80g of Hizentra (the subcut version of Privigen) across the month which I have been doing as two infusions a week (i.e. 10g twice a week over a month= 80g).  However in December I had a massive increase in symptoms, and although it could have been coincidence (fostering-related stress, being run down and having a cold virus etc) I was really worried that I was relapsing.  So my lovely neuro specialist nurse increased my dose to 12g twice a week, which I know doesn’t sound like much of an increase but that equals 96g of immunoglobulins across the month, which is an extra 16g on top of what I was getting before, and already just two months in to the new prescription I am seeing results from that- with an increase in energy and a reduction in nerve pain, tremors and jerks (all good things!)

There are downsides of course, like there are with everything.  Instead of someone else jabbing a needle in my arm or hand once a month, I am stabbing  four tiny needles into my belly with every infusion- so stabbing myself 32 times a month.  But there are people on insulin and other medications jabbing needles into themselves every day, so I try to keep it in perspective.  Also, being the one in control of when the needle hits, and having an abundance of flesh to choose from (haha…boohoo) is preferable to someone else rooting around in the crook of my elbow for a viable vein.

We’ve had to find ways to store my medication and all the associated STUFF that comes with it (and there’s quite a lot).

stockingup

I get a delivery once every 12 weeks and it takes me maybe an hour to unpack and check that and put it all away, making sure to rotate the remaining stock so that I don’t end up with out of date human immunoglobulins stuffed at the back of a drawer.  I had some issues in the summer with not being able to keep the room cool enough (Hizentra needs to be stored at room temperature) but a fridge thermometer and a fan have helped, along with moving the drawers that my medication is house in, into a shadier area (as in out of the sun, not further along the A6).

Some nights when I realise I need to do my infusion, which takes about two hours from start to finish, I just feel like I would rather do anything else on earth.  That proper petulant child part of myself that I rarely allow to the surface comes stomping out, and I just want to fling myself on the sofa and say I CAN’T BE BOTHERED and possibly even whine WHY ME?  But I always shake myself mentally and remind myself that back in the early days of my diagnosis, this is what I dreamed of.  Seriously, to be almost symptom-free most days and doing my own treatment in my own home at a time that suits me (usually in the evening, watching TV in bed) that seemed like a FANTASY.  Now it’s my reality, and it’s easy to slip into taking that for granted and seeing only the negatives (it stings, it’s time consuming, I would rather be doing x, y, z etc) rather than the positives (it works, it has almost no negative side effects and it’s goddam FREE on the NHS).

eveningplans

So overall- my first year on SCIg?  It has been life-changing, and I say that without hyperbole (for a change).  I feel so lucky.  And no, I don’t always manage to hold that feeling, when one of my infusion sites blows and I have what is essentially a mix of thousands of other people’s sticky immunoglobulins seeping out of my belly and all over my clothes and/or bed sheets then yes I think “FML” because I’m only human.  But the majority of the time, I feel incredibly blessed and grateful because I know how fortunate I am to have this treatment freely available and that it works so well.  So well that there will probably even be people reading this who had no idea I even need it 😉

So here’s to a year of FREEDOM, and if not good health then at least well-managed illness, and may there be many more!*

(*Providing the tories don’t dismantle the NHS that is…but that is a separate blog post ENTIRELY)

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45 minutes

That’s how long my return to nursing lasted.  I stood on a ward for 45 minutes and I knew, without a shadow of a doubt that I was making a terrible terrible mistake.

Actually, there were seven days previous to those 45 minutes where I sat in lectures and workshops and wondered if I was making a terrible mistake, but it was really the 45 minutes on the ward that did it.

Sometimes you really really want something to be right, and to be true…but it just ISN’T.

It would have been so impeccably timed, just weeks after our foster baby moves on, for me to throw myself headfirst into an intense and demanding program of study along with a 30 hour a week job.  Financially, it would have been a welcome relief, after so long on one income, to finally be able to pay down some debts and relax a little.  Practically, it seemed that the boys both being in school now would make everything that had previously been so difficult when the two of us were working, suddenly so much simpler.

But it just doesn’t, wasn’t and isn’t and I just can’t.  There were a few days there when I kidded myself that I could, but reality and my heart tell me otherwise.

I won’t lie- I feel like I have failed, like I am disappointing people, like I am letting my family down, and making a big mess of things.  It’s all well and good being able to identify when something isn’t right, but dealing with the ramifications of that decision are invariably much harder.

On the other hand though, I am feeling strangely positive.  I say strangely because positivity is not really something I am known for, and on the face of it right now things seem kind of bleak- in the sense that everything I had been throwing my energy into for this year is now in pieces.  Although I believe that according to physics at least, that means the energy now has to go somewhere else, and maybe that’s where my weird buoyancy is coming from.  I have been trying to give this return to nursing my all, and now it’s clear that isn’t what my future holds I’m left with all this drive and determination to wield in another direction.

I am aware that I am currently following a similar trajectory to a pinball at this point, just flying wildly from one thing to another and I don’t want to ping, or pong back in any direction from which I’ve already come, because as nursing has clearly demonstrated, if it didn’t work out then, there may be good reasons why that is, that are still relevant now.

So although I loved being a nurse at times, and still am a doula technically, and loved fostering Squishlet, all for very different reasons, when people ask me if I’m going to revisit any of those my answer for now at least, will be a resounding no.

I do need to find a way to contribute financially, and I am not someone who revels in the idea of being stationary for too long.  But for now I am trying (really trying, very hard) to embrace the fact that I basically have no idea what the hell I am doing with my life, and resist the urge to formulate a plan (any kind of plan) just to resolve that.  I don’t know what I’m doing, I don’t know what I’m going to do, and yes it’s terrifying, but it’s also fine for now, and more honest at least than pretending I have a clear strategy or ‘faking it until I make it’ which I have attempted in the past, and only ever makes me feel rubbish about myself.

And as always, I’ll be writing throughout, since it’s the only thing I seem to be able to do consistently and never quit, so you can look forward to more ramblings in the coming weeks.