Ankylosing Spondylitis and Me – My Story after diagnosis
It has been a long time since I wrote about my condition here. As anyone who knows me in the ‘real world’ and online knows, I don’t like to let this strange sounding illness define me, however I have always felt strongly that in sharing my journey, it not only helps raise awareness, but also helps others living with AS or an invisible, chronic illness realise that they are not alone.
So where am I now…?
Life with a chronic illness is now very much the norm for me; the ‘acceptance’ and ‘anger’ stage is well and truly over; I continue to move forward with this often cruel ‘friend’ of mine beside me. I have a strange love/hate relationship with my Ankylosing Spondylitis as without the 2015 diagnosis I would still be very much in the dark, worrying about the collection of nasty symptoms.
There are of course many reasons why I hate this ‘companion’ of mine; the Winter months are always the toughest; I’m not sure if it’s the weather, but Winter is always a time with my AS flares are at their peak. Thanks to my Humira injections, the symptoms have definitely lessoned since they began a year ago now, however this year I was hoping to be ‘symptom free’. It wasn’t to be though due to endless bugs and antibiotics over Christmas and New Year, I have now been a month off my medication resulting in the debilitating fatigue and pain.
Pain I can pretty much deal with, as with pain there is literally only so much you can do. If you’re in pain you simply stop, or go out for a walk, which soon elevates the symptoms… fatigue is an altogether different symptom. When you are in pain and fatigued, the pain stops you from sleeping, and the fatigue stops you from going out for the walk or taking the exercise you need to help ease the pain!
On the outside, I might look a little more tired than usual, but often those around me, even my immediate family, won’t see how tired and wiped out I feel as every morning I peel myself out of bed, put on my clothes and make up and do my best “all is well” face. You see, fatigue is a symptom I have learnt to hide well; after all, school runs still need to be done, beds made, laundry taken care of… the list of jobs is endless, so going back to bed isn’t an option, and admitting I need to rest, STILL 3 years on, feels like I am letting everyone down, so I push on…
The flip side, however is positive; I don’t rest up perhaps as much as I should, but there are positives 3 years after my diagnosis, below are just a few…
I know my limits
Living with Ankylosing Spondylitis for the 10 years prior to my diagnosis, I look back with total admiration at Jessica ‘pre diagnosis’ at everything I accomplished, achieved and tolerated. From working in an office with minimal breaks due to heavy workloads to helping lay miles of wood chip throughout the woods, hulking chestnut fencing through the woods, all whilst suffering from pain and fatigue in silence.
Since my diagnosis, I continue to work hard, however I give myself plenty of breaks, whether at my computer or as a mummy/wife/woodland owner. I still work in the woods doing manual tasks, but I know what I should be doing and what I shouldn’t. I might think I have the physical strength to lift a chestnut pole, but if I lug it around, I will most likely really hurt myself, so now, I leave the bigger jobs to my husband.
I have a better way of explaining Ankylosing Spondylitis to others
While the science behind it still escapes me, if someone asks me to explain my condition to them, I tell them it’s an autoimmune condition and something that can’t be seen on the outside. As a creative person, the facts and science often get me in a muddle so I tend to explain it to people in a way that they could visualise or get a sense of themselves, so pain, people understand… but the physical side of the fatigue I either explain that as the feeling when you have been struck with the worst flu you can think of, everything aches and you simply just want to lie flat and not move… or the feeling you get when you are on an exercise bike or running machine and you turn the resistance or incline setting up. That feeling when you want to push forward, but it’s like pushing against a physical barrier… that is what living with Ankylosing Spondylitis is like!
I know how to say & spell ‘Ankylosing Spondylitis’!
I remember sitting alone in the consultants office, going through my blood work and the MRI that I had had, she looked at me and said in an abrupt manner “I can say with 100% certainty, that what you have is ankyloksdhkahsingsponfjlkjiudylits” She blurted it out and rambled on, my stomach sank to my toes and I said, “sorry what? can you say that again”, she blurted it out and off she went again on a tangent… she then thrust lots of leaflets in my hand and off I went. In a blur I drove home and because I didn’t understand ANYTHING of what I had just been told, I googled a word, I had no knowledge of and attempted to spell it… Three years later, the name of this nasty condition just about rolls off the tongue. Small victories!
Those around me have a better understanding of what’s actually going on if I’m quiet…
Over the years, people have come and gone out of our lives. There are those you can tell will be fleeting friends, then there are those who you know stick with you while the times are good, then there are those gems, the ones I have in my life now, who know that if I go quiet… I’ve gone quiet for a reason. I don’t like to whinge, I don’t like to ask for help, so I’ll often ‘dig in’ and keep myself to myself…. part of this is due to my ‘introvert’ nature, but there is a big part of me that just caves when I feel like I can’t cope. Recently, anyone who knows me in the ‘real world’, and perhaps those online, might have also noticed that I have been quiet… well these last few weeks have been the worst in terms of an AS flare in a long time, so I really haven’t felt like getting out much, real world and online.
Just last week a friend messaged me to ask if my little girl would like to go back to hers for a playdate with her daughter (one of my birdy’s good friends) after school as she “had a feeling” that I was having a bad flare. I had said nothing to her of the flare, we see each other often and are good friends and she just KNEW.
The day of the playdate came and she very firmly ordered me to “stay at home, sit down, relax and watch some TV”, when I went to collect my daughter my wonderful friend had not only given my daughter the most wonderful afternoon, but she had cooked for me, she had cooked a meal for and our other friend in the village who has AS, a meal to take home and enjoy, rather than having to cook. How incredibly lucky I am to have a friend like her.
I know the key elements that can set off a flare
- SUGAR – too much and I feel it almost instantly. Pain; nasty, angry, physical pain, so I have cut right back.
- ALCOHOL – too much isn’t good for anyone, but when I have alcohol now, I genuinely feel like I have been poisoned, it makes me feel incredibly ill, so I have stopped. NO, I’m not pregnant (as most seem to assume when I turn down a drink!) I simply haven’t had a drink since October and that’s the way it is going to stay.
- DAIRY – too much and the fatigue is horrendous
- POOR SLEEP – My daughter has never been much of a sleeper, so since becoming a mother right up to the age of four, I function on limited hours of sleep, however I am now working on my sleep, going to bed earlier, leaving the phone off rather than checking emails late at night. I remember people telling me with my daughter that “sleep breeds sleep”, well I’m trying that with me too. I used to love a lie in, but those days are long behind me now, so it’s about making use of the time I do get to rest as much as possible. I will be sharing more on this in the not so distant future.
Medication DOES help
I realise that everyone is different and everyone is absolutely entitled to their opinions on this particular subject; but I have tried different diets, supplements, exercise regimes etc etc etc over the long period of time I have been living with this… the one thing that has made the biggest difference for ME, is medication. Yes, I still get flare ups, but they are nowhere near as frightening or alarming as they used to be. I have movement, some days less movement than others, but as far as I am aware currently (still waiting on MRI results) there is no fusing, and at my last consultant appointment the proof was there in my blood work, my inflammatory markers are right down from where they were.
Would I like to come off medication in the future? Yes, absolutely.
Do I think there is another solution? Hmmm… for me right now, Humira is 100% MY solution.
No one case of Ankylosing Spondylitis is the same
There are people I have spoken to, some on a regular basis, some who were diagnosed really fast, some who didn’t know an answer for years, there are those with pain and fatigue, some with only pain. So even though the condition and diagnosis is the same… each and every case is different.
I know that I’m not alone in this
If we step back to the day I was diagnosed, with the previous consultant who wasn’t the ‘right fit’ for me, I remember feeling so alone. Not because it was just me in that room with her… well of course there was an element of that… but it was the feeling of “shit. I have never heard of this thing before. this can only be me”… fast forward to now and there are at least 4 people I know in my local area with Ankylosing Spondylitis! Not to mention the wonderful people who have reached out to me online, not just with AS, but with other auto immune conditions. Then there are those who don’t have the condition like the friend I mentioned above who doesn’t even have it, but is totally there for me. No, it absolutely doesn’t remove any of the sadness, frustration and disappointment I have with my body and myself for having this, but it does absolutely make me feel less alone in this.
There is support out there
From family and friends, to social media, bloggers and support groups, there is so much out there. I may be a few years down the road from diagnosis, but there are still the odd days… the days like recently when I cave and go quiet when I think this disease is conspiring against me, but it doesn’t take long before I reach out to someone, whether it’s my mum for a howl of “I just want it gone!”, to sending out a DM to someone on Instagram who I know is in the same boat with an invisible illness.
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.