Living with Ankylosing Spondylitis (AS)
It has been a while since I wrote about my invisible illness, Ankylosing Spondylitis, and whilst I don’t like to let this illness define me, I feel it is so important to write about it, not only for myself, but in supporting others and raising awareness to this relatively ‘unknown’ chronic illness.
It has been over a year now since I was diagnosed. To say it has been a rollercoaster of emotions would be an understatement! I think most would think that receiving a diagnosis ‘solves’ the problem, however, my diagnosis was only the start of a long road to getting the right treatment and learning to live with the diagnosis.
So where am I now?
Last time I wrote about my Ankylosing Spondylitis, I was angry.
- I was cross and disappointed in my body.
- I was cross that this wasn’t going to go away.
- I was cross that it had an impact on so many life choices that I wanted to make.
- I was cross that people didn’t understand.
…very, very occasionally, I am back in that angry place, however, for the most part, I am back to acceptance, moving forward and getting on with my life in the very best way I know how.
I am now on various medications, which for the most part do the trick. I am on Arcoxia and also a two weekly Humira 40mg injection. The Humira was initially like a magic tonic that took away my pain and fatigue. It certainly took a while to settle down, I would have a couple of days of instant improvement immediately after the injection (literally the next day!!) and gradually it would wear off as the next injection was due. The delivery service has been amazing, it is all delivered to my door, and the first injection I had a nurse with me to help me emotionally as well as practically.
I am now established on the Humira, and as I say, for the most part I am doing well, however the pain is still there occasionally, fatigue is also still there, so this medicine hasn’t been a ‘cure’, but then I really wasn’t expecting that.
I also carry on with my active, healthy eating lifestyle, I walk daily, often three times a day, I try to keep moving as much as possible, with pilates as gentle exercise. I have removed as much crap from my diet as possible, apart from the occasional baked good (baking makes me happy, so baked goods can’t go!). The aim is to keep as healthy and active as possible without pushing myself.
I think most who know me, and know me well, now understand where I am with my condition. I don’t broadcast when I am having a bad day, but like any good friends and family, they just know, they recognise the signs and they are always there as an ear or to offer help where they can.
I like to keep busy; I enjoy my home life, work life and social life, all these things are vital to my emotional wellbeing and without the support system I have around me, it would be so much harder, so I feel unbelievably fortunate to have those who care around me most days, whether at home, or out and about, be it a friend at preschool pick up, a quick catch up in a local coffee shop, I make time for them and they make time for me.
The road ahead…
There are still a few battles left to fight since diagnosis; some fairly minor in the grand scheme of things, others just plain frustrating, but most have a ‘simple’ answer!
Battle 1: Housework!
A battle no-one can avoid unless you have a team of staff and heaps of money to keep them in line, however, with a chronic illness like Ankylosing Spondylitis, this is a battle I absolutely loathe. I have a Dyson hoover that is weighs a tonne and whilst our home isn’t huge and is only on one floor, hoovering knocks the stuffing out of me completely.
Ask for help, now I simply cannot afford a cleaner, or a new lightweight hoover, so I ask for help or I simply do it in stages. Little bits at a time. I love nothing better than going at it, but my body doesn’t thank me after, so I have to do a little bit, stop, take a break and then carry on later, the next day, or let my husband take over the last bits.
Battle 2: Never accepting help!
I’m just not good at asking for help or when it’s offered accepting it. I feel guilty whether asking or accepting, however, as everyone understands, this illness isn’t going away, (at least not just yet!) and they know that I wouldn’t ask or accept unless I really needed it.
Don’t feel guilty or proud and just ask for help and say “Yes PLEASE!” if someone offers. It is the very fact that people understand that makes them offer and help, it is us who turn a simple request into something guilt-ridden!
Battle 3: Early night Vs Late night!
We’ve all been there, “just one more episode” of the latest boxset or Netflix series you’re watching, or the staying up to finish up the jobs of the day. This is something, I am SO bad at. I see my evenings as a time to ‘flop’ or a time to catch up on work that I haven’t been able to do during the day for one reason or another.
GO TO BED! If you are tired, GO TO BED!! The boxset can wait… well, it can’t in my case, as my husband simply continues watching, but that’s a ‘Domestic Battle’, rather than an ‘AS Battle’!! So, even with the insomnia I have, I have started to take myself off to bed and switch off in an attempt to get some decent sleep and rest. No, I’m not necessarily going to feel wide awake and raring to go the next morning, as I now understand, that even with a full nights solid sleep, my condition means that fatigue is just something that will be there. However, it doesn’t need to be an ‘early’ night as such, but getting in to bed and resting when you can is vital for your mental, emotional and physical wellbeing.
Battle 4: Parenting!
Now, this should never be viewed as a ‘battle’ as such, however, anyone with small children knows the daily battles we go through just to get everything going. My little girl is unbelievably loving, caring and understanding. For a child of 3, she knows that her mummy often doesn’t feel well, but she is 3 and she is strong, she is bright and she is learning. Quite often she needs so much time, whether it is serious chats about her dolly misbehaving when I’m so fatigued I can barely string words together, let alone, chat along cheerfully and play along, OR there are the poor health issues herself and the ‘Threenager’ meltdowns of which there have been masses recently.
I’m not sure I have one, this is one I am still muddling through and working out. As I say, she IS understanding for the most part, however, those days where it seems impossible, we just make it work… my mum, made me realise the value in light TV viewing. I always worried I was ‘failing’ using the TV as a babysitter when things got too much, however after 4pm, it’s OK. On a rainy day, a DVD for an hour is OK, and it’s also OK, if I leave her to read to herself or play alone… it is good for her, to know that she can have time to herself too. For the most part, she knows I will play the most imaginative of games, so the odd day when I simply don’t have the strength, TV and playtime alone is absolutely OK!
Battle 5: Medical Professionals.
Unfortunately, this is still a big battle for me. Yes, I have a diagnosis and Yes, I have an absolutely AMAZING GP, however, my condition is mainly managed up at my local hospital… as we all know these services are stretched and I have to say, I really struggle getting anywhere. I would like, and quite honestly would expect some kind of ‘Progress Report’ now that I am a year down the line and on the medication that I wanted to get on.
However, I rarely see anyone. I would like to see someone and have put a request in with my GP, however, it is always for the specialist who deals with a variety of conditions, who quite honestly looks at me blankly when I sit in front of her. I would like to see an Ankylosing Spondylitis specialist. I don’t think that is an unreasonable request, however, this just isn’t something that seems available to me.
The medication, took a huge battle to get on. I had to almost PROVE that previous medication was making me incredibly unwell and that it was adding to symptoms rather than helping, I FOUGHT to be seen and get to where I am now…
In answer to seeing who I would like to see… I don’t have an answer other than when I FINALLY get sent my next appointment (request went in two months before Christmas!! Yep, I know.) I will simply refuse to see the consultant who I simply do not trust to help me and insist I see the AS specialist at the hospital. In answer to the medications and what you need, I can only tell you to fight for it, to push on, to make them listen. It is the only way, I even got a diagnosis, it is unfortunate that it continues when you have a diagnosis, but it does, so the only answer for that is to fight for yourself, you condition.
So, life goes on, diagnosis is the first part of the journey, what comes after, is a juggle, but all of it, ALL OF IT, is manageable with the right support system.
Yes, there are daily struggles, battles and the medical professionals do seemingly forget about ‘Patient number XYZ’, but we do have the NHS in this country, we live in a day and age where we can reach out to people, whether it’s someone to help those with chronic conditions physically, mentally and emotionally, but we also live in a time where we can reach out to others who suffer similar conditions, via social media and online communities.
The aim of this update, is to reassure once again, that:
- we aren’t in this alone
- we can and should ask/accept help
- we do have people who listen, in the ‘real world and virtually
- there are medical professionals like my amazing GP, who will help with the fight to be seen whether in diagnosis or ongoing care.
If you or someone you know thinks they may have Ankylosing Spondylitis, do talk to your GP, there are a lot of resources out there, and this condition isn’t as rare as you think.
You don’t need to suffer in silence and despite, what I have said above, help is out there and you can get a plan in place to really help your condition.