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1 year of arthritis treatment

I went for my one year check up today and I learnt some new, pretty helpful things.

Firstly, any arthritis that affected my body prior to starting treatment, is in my body and here to stay. The treatment does not cure or reverse. It stops or slows the progression. This is a pretty fundamental fact I seem to have overlooked, having spent a long time wondering why I still ache despite being on a cocktail of meds.

In addition to this, any damage done is done. I don't know the extent of it but I'm sure this information will emerge as I get older. I had some xrays today on my hands and feet to form a baseline, in case damage increases.

Secondly, I have to exercise through the fatigue. It is SO counterintuitive, but the expert has spoken. I have gone back to my weekly planner and written a few exercises to complete everyday, taking into account the need to get out of breath, and 2 of my sessions being strength related. She has assured me I will not get sicker and the fatigue will not drag me down, and I will eventually feel even better.

Rather than a 6 month check up she will see me in 4 to catch me quicker if anything goes wrong.

She has also suggested I take an additional DMARD with my current sulfasalazine. It can give a bit of extra edge to the drugs in terms of reducing stiffness and pain. She's sent me away with the info - I've declined for the time being because my bloods are showing a healthy functioning person so I don't want to start mixing things up. Classic anxiety!

They key takeaway point from today is I am where she would expect me to be in terms of recovery/management. It's reassuring, but also quite shocking that I can be such a state yet still be where she expects.

I've had 2 days off work for fatigue, but I think what has happened is I caught a bug or virus. Due to my DMARD suppressing my immune system a bit of extra work needs to go into fighting bugs. On the days I have worked this week, I was out for the count within an hour of being home. I was feeling really low about it, and really low on reflection of the past year.

I did feel better by looking at some of my achievements this year, such as an 11k walk, trying rock climbing, walking miles and miles around Dublin. Taking pictures is important to me because, by documenting this past year , I can remind myself of what I have and can achieve, as well as reminding me times I have been exceptionally happy and managing despite the challenges.

Happy bittersweet 1 year x

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Painted the dining room by myself! Did the front garden from start to finish by myself! Made granola by myself! I know lots of people WITHOUT arthritis who couldn't do these things!

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Written by my friend Ruth Scammell, helping me raise awareness.

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Quick update

I know I've been a wee bit absent the past month - this is mainly because I've gone back to work and I've become all consumed by it and all my hard work of sorting my life out in the summer seems to have come crashing down.

I'm sure this is not actually what has happened but it does feel like it! I've already had a day off with fatigue and I've completely lost my structure and routine, including WRITING my structure and routine on my weekly planner. One day last week I forgot everything like my phone, doctors appointment, to pay a Bill, to put the car headlamps on....

This Wednesday I am attending a conference for arthritis sufferers in Portsmouth. It is set up by the Department of Rheumatology at QA. They regularly send out newsletters, Information for sufferers locally and charity events, which creates a wonderful community feel for all us broken humans. I have been lucky enough to be supported by my work place, having been allowed the day off to attend. The itinerary includes sessions directly related to the issues I struggle with, and these issues are also reasons I have been off work so I have sold it to them as being in all our interests!

I am going with my new "arthritis friend" who I met up with in August. She contacted me following my article in the local news. She's the same age as me so it's nice to have a buddy who understands the illness precisely as I experience it. It'll be great to spend the day with her!

I will feedback to you all the interesting science I will learn on weds!

Much love

X

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Speak to anyone with arthritis, in any form, and they will tell you one of the biggest issues is fatigue - This is exacerbated by poor sleep. If you’re in pain, you move. But your joints hurt and any movement is painful so lo and behold you’re awake. The pressure on joints is painful (I genuinely get bruises on the inside of my knees when they rest on each other in my sleep), but this pressure can also be from the mattress.

The only way I get any form of decent sleep is by chugging the pain killers before bed, otherwise I get restless legs and I wake myself up by waving my feet around to loosen up my ankles.

Therefore, it should come as no surprise that myself and my partner have finally invested in some decent sleep hardware. Still being in our 20s and having moved around quite a bit, a large amount of our furniture is freebies from family, and some rather epic gumtree upcycles. Most items are not new and not bought by us - which is amazing because we have a wonderful home filled with bargains. It also means our beds have changed often with a slightly new upgrade offer from a fanily member here and there.

So last week we decided to finally get our own KING SIZE slice of heaven, in the form of a Casper mattress. We also made a visit to TKMaxx to buy some luxury pillows (oooh fancy). I have to say, the clever marketing from Casper reeled me in a treat and I ordered within 10minutes of reading the website. There’s a whole ton of science and engineering behind the construction of it, and the Casper company have won loads of awards.

After our first nights sleep on the cloud of dreams, I can see why. We have 100 days to return it free of charge if we find it isn’t for us, but I doubt that will be the outcome.

It turned up with free delivery in a box weighing 40kg. They deliver to the ground floor only, but me and my muscles got the bad boy upstairs and set up. It just rolls out and rises and is ready to go in about 5minutes!I was also able to pay on finance making it more affordable.

So for anyone with a musculoskeletal disorder who struggles sleeping, I urge you to invest. It may just change your ability to cope with the pain, pressure and fatigue of daily life.

Which? named the Casper the best buy of 2016.

For more info go to www.casper.com

*the photo of the bed is from the Casper website. As much as I wish our room looked like that.

*the cartoon is also from the Casper website

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Reflections

I've had a really peaceful and reflective morning, and having lots of good positive thoughts. It's the last week of the summer holidays, and my aim for these 6 weeks was to not plan too far ahead, remove the pressure of having to be places and just allow myself to feel what I feel, do what I feel like doing, focus on little day to day achievements and activities that I had previously been struggling with. Overall, I've done a pretty decent job if I may say so, feeling more stability in life, and happy in my body. I have experienced multiple instances of "flow" (repping the positive psych, even from cleaning the house!) and this has led to further positive steps. I've also finally acknowledged that I have dealt with the challenges of the last 12 months pretty damn well! This period of time has been long awaited and much needed! IA challenges aren't just about the physical aspects. The repercussions are far greater and when mixed with other instabilities out of anyone's control, it's no wonder the link between arthritis and depression is so high. I have written and deleted a few versions of this. I wanted to try and help people understand the major challenges from this year by making the challenges ambiguous so others could put themselves into my scenarios. But I can't make them ambiguous. They are unique, and the path that has led me here feels a little like Lemony Snickett's series of unfortunate events. If certain situations had been different the year may not have been as awful, but I am stronger, more determined, and so much more appreciative for the good in my life. There are so so many good things; sometimes it takes for someone to stop to recognise them.

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Well this is a new one. I have pretty much always had that "runners itch", and have suffered with it a fair amount this past year, from just walking fast! I nipped out to get something and thought I'd use the opportunity to walk a bit faster than usual - needless to say it felt like I was being eaten by bugs so I had a good scratch when I got in. The weird bit is I've bruised my right leg from scratching, but not my left. And I did not scratch hard. I'm wondering if this has anything to do with the fact this is my useless leg and has little muscle on it?! If anyone has any ideas, please share! Mainly because I like to understand how the body works!

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Arthritis Research UK are really upping their tempo. Thank you for your support ❤

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SLAINTE DUBLIN!

Here is my state of the art guide to a City Break for people with inflammatory arthritis!

It was my first non-relaxing trip away since the diagnosis and we wanted to make sure we had the best time possible. I managed to walk 28km in 4 days (most crammed in to 2 days) and pushed myself for 12 hours beyond what I thought was my limit. So here goes!

1. Be HONEST AND REALISTIC before you go about what you can and can’t do, and discuss this with your travel buddy so there are no surprises.

2. Pick a place to stay that is in easy distance to sights and transport links, but a place that will also afford you some decent sleep (because trust me, you will need it.)

3. Get your bus routes, taxi numbers, tram lines ready and prepared and stowed in your bag for the inevitable moment of going too far.

4. FOOTWEAR. I shall say no more.

5. Plan places you want to go to, and make a route that allows you to go to these places in a logical order. This will reduce unnecessary steps.

6. Have a good breakfast to fuel you for the day - lots of slow release energy! And make sure you stop off for a mini rest and a little food as and when you need to. Work it into the trip and go somewhere different or unique to make an event out of your fuel stop.

7. If you are planning on an evening out (in Dublin this is unavoidable, and a crime if you’re choosing to stay in!) Make sure to factor in afternoon time for a sneaky bit of shut eye. Most places you can check in after lunch so you can definitely get some zzzzz's before heading out.

8. When you are out, get your supportive friends to grab you a chair. You will last longer by sitting and your friends can enjoy your superb company for longer.

9. Have a contingency plan ready in case you aren’t 100%. If you wake up the next day and you feel awful, know that you have a plan for a “less than 5/10” day.

10. Again, BE HONEST. If it gets too much that’s okay. Things can be adapted. People love you and want you to be okay. Hopefully things won’t be too bad because you know your body and you must absolutely plan plan plan.

(Disclaimer: I slept for 2 days when I got back and was depressed AF cos Dublin was amazing and there’s no Irish man playing his guitar in my living room)

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I promise I'm working on a piece about our trip to Dublin and how to enjoy a holiday and change of routine with careful planning, but right now I'm pretty limited! Trusting my neck to support my head would be a good start at the moment!

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So proud of what I achieved today with the help of a fantastic friend of mine. She text me the other day saying "so when are we going for one of these walks you mentioned", and she has been fully behind getting me out and about, and it's truly wonderful having friends in my life like her, who empower me to push myself. This time last year I was sat on the sofa watching box sets in too much pain to even get to the toilet without using crutches. One year on and I walked 11km, through the beautiful countryside right on my doorstep, came across a lovely field of sunflowers and accidentally fell into a shallow part of the river - proving I CAN do these things (although can't walk across stepping stones)! Adding to the momentum, I tidied my house this evening, got myself fully ready for bed (teeth brushing and moisturizing levels!) And booked myself in for a soothing Pilates session tomorrow and an aqua class on Thursday. Thank you to my wonderful wonderful friend for joining me today, it has so much more impact than just walking. ❤❤❤

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Happy Monday everyone! The sun is shining once again and I too feel sunny on this day! I feel in the absence of my historic posts and little info given, I just want to explain where I'm at right now. My IA is really going well, to the point that I seem to have accepted and adapted and the new me is here. When we go through something traumatic, the common misconception is we go back to who and what we were before the trauma. However this is far from the case, and part of the process of healing involves an awakening when one has finally reached rock bottom. I am focussing significantly on anxiety and depression at the moment, and I don't see this as a separate issue to my IA. Whilst they are different conditions and treated separately, both are interlinked. As I have previously written before, arthritis related medical conditions are synonymous with mental health decline and I am no exception to this. I am currently undergoing a common CBT method of treatment, known as behavioural activation. The idea is that what we do is split into 3 categories; routine, pleasurable, and necessary. The behaviours I have not been engaging in are predominantly routine and some pleasurable activities. I don't tend to do pleasurable activities (like seeing friends) if I have to travel to their home and I am by myself. I don't have a clue why this is but I am working on it. For me to start feeling better, there is a behavioural cycle as indicated in the diagram above. If I start doing more things I'm missing out on then my mood will improve and I will want to do more. It is a good spiral rather than the bad spiral that got me here! I have a weekly planner and I write in targets of routine, pleasurable and necessary activities for each day, as a sort of contract to my future self! It's not set in stone, but so far it's going well and I'm already feeling a little better. However I do want to say the following to loved ones around me who I want to see/want to see me or do activities together: Making plans IS overwhelming for me at the moment and feeling pressure may push me back from the progress I've made. You may see that I have been doing things and wonder why I've not seen you. Chances are my partner has been with me and that changes everything. Please offer to come to me or to my town. This makes our catch up far more likely. Please don't ask me what days I can do. I don't know if I will be okay in 5 days or if it will be a bad day, and I need the freedom to be in charge of this. Short notice is much better for me. Please don't ask what I want to do. Again, what I want to do now may not be what I want to do then and will increase the likelihood of me cancelling. Tell me what YOU want to do. Please be patient with me. I don't want to be difficult, I don't want to feel like This, and I am doing everything I can to pull myself out of this. Worrying people are fed up with me adds another layer of anxiety. Please drop me a text reminding me that you are thinking of me. Sometimes saying "I'm coming to see you tomorrow, I miss you, when will you be in?" is all that is needed. This makes me feel valued and my needs understood. I'm only saying this because I can feel some of my friendships wobbling because I'm not as reliable as I used to be - and I imagine that MANY people who have struggled feel like This, so maybe you'd want to try some of these tips with them? One size certainly doesn't fit all, but perhaps a different approach might be what is needed for others who may be hermitting at the moment. This being said, I have a few solid plans this week and I think that's where I'm happy with at the moment. Which is better than a few months ago. Keep that chin up, and tell someone you love how much they mean to you - they might need to hear it today. Xxx

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With the joy of summer holidays now upon us (lol at the summery weather we are enjoying, I’m writing this as the wind batters the front of the house), my wonderful failing body has been able to fall into it’s natural circadian rhythms and take it’s time to start healing, in whatever way it needs.

For those of you who aren’t aware, circadian rhythms are cycles that occur within our body every 24 hours - my favourite one being SLEEP.

I’ve had a very odd relationship with sleep, and more recently I’ve been pretty obsessed with it. I constantly say to my partner “I just need to fill the time so it gets to bed time quicker” and when I’m driving in to work all I can think about is coming back and getting super snuggles under the duvet.

My body has switched to a rather joyous sleep wake cycle of midnight until 5am, falling asleep when I’m tired and rising with the sun. I’ve always been one for a strong 8-9hour sleep, and truth be told although I’m awake from 5am, once Liam has gone to work I do go back to sleep for some extra Zs, not that I need them.

Following a rather lol-able yet traumatic day this week when I went cold turkey on my antidepressants, I was practically comatose and had some amazeballs dreams, for about 15 hours. I must have got some seriously good quality REM, and I’ve started reading more around sleep and it’s association with IA and depression.

So first thing I’ve found is that, whilst sleep cycles are well known to be 90minutes long, the cycles prior to midnight (ish) have more Non-REM sleep, when you are in an INSANE deep sleep and where your body does most of its repairing, whilst those from 3am onwards have more REM sleep which is lighter and more to do with memory creation and dreams. This would explain my body’s craving to get to sleep asap on a normal working day.

Additionally, one of the major issues with my IA has been the interrupted sleep from the pain of my joints, anxiety, my god damn cat (love you millie), and my partner smacking me in the face in his sleep (he says it’s an accident, I’m not so sure). This can directly cause depressive symptoms, and as we all know, sleep deprivation is a torture method!! Thankfully the IA is now at a well controlled and manageable level and I am very lucky to no longer be in pain.

Due to the fortunate fact I am coping well with the IA, it leads me to consider that my current issues with fatigue and sleep are due to the mental health issues I am currently being treated for. So I found this article which sciences shit up for me, cos I like that…

“The more severe the depression, the earlier the first REM begins. Sometimes it starts as early as 45 minutes into sleep. That means these sleepers’ first cycle of NREM sleep amounts to about half the usual length of time. This early REM displaces the initial deep sleep, which is not fully recovered later in the night. This displacement of the first deep sleep is accompanied by an absence of the usual large outflow of growth hormone. The timing of the greatest release of human growth hormone (HGH) is in the first deep sleep cycle. The depressed have very little SWS [slow-wave sleep, Stages 3 and 4 of the sleep cycle] and no big pulse of HGH; and in addition to growth, HGH is related to physical repair. If we do not get enough deep sleep, our bodies take longer to heal and grow. The absence of the large spurt of HGH during the first deep sleep continues in many depressed patients even when they are no longer depressed, known as being in remission.”

(From Cartwright, https://www.brainpickings.org/2012/08/13/the-twenty-four-hour-mind-rosalind-cartwright/

So in a nutshell, when you are depressed, the NREM sleep in your first cycle is way too short. Although the sleep cycle is still 90minutes, the deep sleep and healing time is shortened, and the HCG hormone is suppressed. So your body isn’t healed as it should be. Therefore, if you have a chronic illness, your body is not able to heal as it should. This would also suggest why I am in SO much pain following any visit to the gym.

Sounds like a fairly horrific catch 22 to me!

What I hope is that the meds and the CBT I am receiving do the job, and I get that joyous deep sleep when I need it!

What I do know is I am feeling a whole lot more rested for letting my sleep do it’s own thing. Hurrah for 6 weeks holiday!!

Xxx

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I'm back

Hello all.

As some of you know I have been through a rather tough patch recently. This has resulted in a few things.

- all previous posts have been deleted - I will be thinking more carefully about what to post - I will consider the needs and wishes of those around me when writing my posts

This was following an issue with a previous post, and I am fully respectful and understanding of the reason it had to be removed.

At this time, I felt embarrassed and a huge sense of grief, so I removed all my posts and have allowed myself time to just be.

This has actually been really valuable and allowed time for me to heal.

Following my article in the local newspaper, I had strangers reach out to me and we have connected. Seeing their Facebook lives has given me so much hope and my sense of helplessness has reduced hugely.

Recently I have done many things I wouldn’t have thought possible, and had feelings about things I haven’t had for a long time.

- sold my car and loved taking public transport - a true physical sense of happiness that has not existed for a long time - stepping up and making up for some of my shortfalls, realising I can do things around the house despite feeling tired and nothing bad happens. - successfully attended a whole wedding, danced all night, and was one of the last ones standing. - allowed myself to let go of control and get drunk at a friend’s party, wasn’t tired at all and didn’t even look at the time. - spent a whole weekend not stressing about the time or things I SHOULD be doing

I am about to finish work for the summer holidays, and this year I am able and healthy and I have an incredible opportunity to really get myself mentally and physically well. It is a stark contrast to the 6 weeks last summer when I sat at home in significant pain and had to use crutches to move every day.

I am really proud of myself and so grateful for all the wonderful people around me who have kept me going.

So now I’m back I will keep blogging, at the request of many of my friends and family, but actually there are some things I need to deal with privately. Therefore, this time it will be a little different, but it will still be me :)

Xxxxxxx