Why I’m not a food blogger…!

Since starting my food exploration I have had to get a bit creative with ideas for dinner/lunch. It’s handy because Andrew really doesn’t mind from Monday to Friday if he just receives protein source and veg… it’s what he grew up with (however the protein sources are VERY different from his childhood… and so are the veg for that matter!! And it’s not now topped up with an enormous portion of potatoes and bisto gravy!! Much to his pleasure thankfully), but for me, my parents were always a little adventurous in their food endeavours, and variation was key… so I do get a bit bored… or if not bored, I just feel the need to create a variety of dinners and food…

Now, I feel that on the days when I try to get creative I have on the whole been quite successful (even if I do say so myself!!), and I have been really quite proud of the taste sensations!! But, before I can show off to anyone about how great meals on this restricted, but gradually increasing elimination diet can be… I’ve eaten it!! Mmmmmm!!

Plus, despite being totally in love with photography… food photography just has never inspired me! Can I really be bothered to get out my lovely camera, just to take a few photos of my dinner… nah!! The light in my kitchen is all wrong, plus it’s October, annd England… there is no natural light at tea time round here!!
So the few… well two things that I have managed to take photos of before they became an empty plate are: A cherry ‘cheese cake’ made for my birthday so that I could enjoy a little (modified) AIP treat:

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And last night’s Prawn and Squid coconut curry:

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As you can see… I’m no food blogger! Things I do wrong:
1) The cake was already half eaten
2) The crockery is OLD!! And chipped!!
3) The background isn’t clear
4) The lighting is all wrong
5) The angles are all wrong
6) The presentation of the food is not considered
7) The photos are taken by my iPhone or iPad.. Not even a compact camera!

To name just a few… but, mmm they didn’t half taste good 🙂

And at the end of a day, that is the main thing I care about! Cooking good healthy food that is helping my body heal itself…

So… what’s for tea tonight?

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Elimination diet… what have I been eating…??!

I first toyed with the idea of a diet change back in June in my blog Food Glorious Food, and then finally in September my blog A New Start with the Diet documented my starting process of a strict elimination diet… well, as I stated in the title of that blog, so far so good… I’m here now to provide a little update on how things have been going! I think you can probably tell I’m pretty pleased, I have posted 4 posts since starting the diet, and my mood, and the topics I talk about are far more positive! You can catch up with those here, here, here, and here!! (Isn’t ‘here’ one of those words that when it is written/said/read too many times in a row it just doesn’t look right anymore!!)

I have been keeping a really detailed (well I hope so/think it is) food diary, and I also did a pain chart of my pain on starting the diet back in August. I also started doing a little video diary… but I couldn’t keep that up for long (1- because I never had enough space on my phone or iPad, 2 – because seeing yourself doing a video diary is the most AWFUL experience in the world, perhaps second only to hearing your voice on a recording… I don’t know why that’s worse, but I seem to remember that I was more repulsed by that back when I had to do my French oral exam!!).

So, here it is for your viewing:

Where I started back in August.... :-(

Where I started back in August…. 😦

The details of absolutely EVERYTHING that has passed my lips since the 21st August (well with one or two days where I forgot to document, but they have been very few and far between!):

Food diary

I’d just like to say that the first few days where I hadn’t started the elimination diet, was not really a true representation of what I would have eaten were I say… at work, or not planning the elimination diet!! My excuse? I was starting an elimination diet!!! I might never eat a danish pastry again!! So I didn’t really hold back… mind you, despite eating lovely salads etc for lunch at work, there were always biscuits and delicious homemade bakes brought in by colleagues, so where I would give nourishment with one hand, I expect I took away any benefit by stuffing my face with lovely cakes!!! Not any more!

My pain chart as of today:

A much happier pain chart androgynous being!! And a much happier Nina to boot!

A much happier pain chart androgynous being!! And a much happier Nina to boot!

Now.. I have photos of my hands from back in maybe May/June time, and some I took yesterday… I don’t know how easy to spot the difference it is… But I can 100% assure you that they FEEL very very different! I’ll stick them in anyway and you can see if you can tell… if not, you’ll just have to take my word for it, and the fact that I ran with the dogs on their walk yesterday… and I’m going out with them again in about 30 minutes… because I am not crippled in pain!!! Wooooo Hoooooo!!

Left Hand May/June 2014

Left Hand May/June 2014

Left Hand October 2014

Left Hand October 2014

Right Hand May/June 2014

Right Hand May/June 2014

Right Hand October 2014

Right Hand October 2014

Wow… I usually only look at these on my phone, and I thought it was difficult to see a difference… but I’ve just seen them on my computer screen… It has surprised even me!!

I just wish I’d taken photos of all my swollen joints… It would have helped me remember… instead this is all I have… And I hope never to see that much inflammation in my body again!! I know I’ll have flares, I’m sure… but I will not let myself ever get to this again!!! A corner has been turned.

Things I can do…!

Here’s a little list of things I can do since changing my diet, that 2-3 weeks ago I couldn’t:

Sleep through (despite being 32 weeks pregnant!)

Roll over in bed without yelping/crying

Pull my own covers over me in the night

Get out of bed on my own without help

Sit onto the toilet without ‘dropping’ onto it or using the radiator and bath either side to lower myself

Squeeze toothpaste onto my brush

Stand for the whole time I brush my teeth

Put on my own socks – quickly!!

Do up buttons and zips

Pull up own trousers… Even maternity ones

Put up my own hair

Walk down stairs one foot In front of the other without using the banister

Make breakfast including lifting pans

Open some jars and bottles

Empty the dishwasher

Squeeze pegs enough to hang out the washing

Walk without a waddle or a limp (despite being 32weeks!!)

Walk dogs (2 big ones at that) about 3 miles most days

Get in/out of the car without help

Chop veg, even squash and swede

Spend the day in the Lake District without wanting to go to bed immediately on return home

Mow lawn

Swim 20 lengths plus without repercussions

Get on/off the settee without help, even at the end of the day

Get up stairs one foot in front of the other without the banister

I’m sure there are other little things that I manage and think ‘whoop!!’, but my memory fails me!! I am growing a baby! 🙂

On balance just to add…

I still don’t have any bounce!! So I can’t jog, run up stairs (tried yesterday in a moment of exuberance!), and I can’t squat/crouch, or get on off the floor…. But hey!! I’m working on it!! 😉

Embracing Research

One of my aims when starting out on this blog was to provide information regarding research into Rheumatoid Arthritis, and other related topics, and to encourage more participation in research. Plus help broaden my own and others knowledge on the subject of Rheumatoid Arthritis.

My rheumatologist is based in Leeds, at Chapel Allerton Hospital. They do a huge amount of research, and my initial experience of Enbral (Etanercept) was through a research study they were conducting at the time (EMPIRE study). The research arm of the hospital is the Leeds Musculoskeletal Biomedical Research Unit (LMBRU), and they have Patient and Public Involvement (PPI) groups meetings every two months or so. Go and have a look at their page, and check out their Useful Links for Patients.

Their next ‘Ask The Researcher’ PPI meeting will be held on Tuesday 12th November at 1 pm on Polymyalgia Rheumatica and Giant Cell Arteritis  presented by Dr Sarah Mackie and ‘ An Update on Scleroderma’ presented by Dr Francesco Del Galdo.

I personally don’t live particularly near Leeds (about a 2 hour drive!), and whilst I’ve been at work I have been unable to attend any of the meetings, but this is something I hope to change now I have a little more time on my hands… unfortunately it’ll be unlikely that I’ll be able to attend the above meeting as my due date is the 8th November!! I know many of you will also not be physically able to get to Leeds, UK, for these types of meetings however, my aim is to bring attention to this sort of thing happening, and that it may be going on at your hospitals too, so keep an eye out!!

And in the meantime, I will do my best to bring you any useful snippets from any meetings/groups etc. I get to attend!!

Good Days and Bad Days…

We all recognise this pattern I’m sure. I have been working at my pacing, and I have eliminated milk from my diet (not quite dairy completely… but not far off), and I am a lot better than I was 4 months ago:

Fat Fingers!

Fat Fingers!

I’m sure the above changes will have made some difference, however, as every medical professional keeps telling me, ‘as it [pregnancy] is a high steroid state for the body, RA tends to get better naturally during pregnancy’, maybe it’s just that as the months pass by, my natural steroid levels are helping me keep my pain at bay.

My last consultation with a medical professional was with my obstetrician. She informed me that despite there being no real risk to baby with taking the prednisolone, if I continue with it for the duration of the pregnancy she will have to have me on IV hydrocortisone during labour and keep me in for observation for 3 days post-partum. This means a consultant led labour in the hospital. I had kinda had my heart set on a labour that was midwife led, and ideally involved a water-birth. So I have decided to give it a go giving up the steroids.

The last time I came off the steroids was at about 8 weeks pregnant (March-April time), I went from being on 10mg daily to nothing, I lasted 5 weeks and I was in hell…. See hand photos above.

Since going back on the steroids, I have reduced them down gradually from 10mg to 7.5mg to 5mg to 2.5mg, but before the obstetrician appointment, I found I was still struggling at 5mg, and therefore didn’t spend many days at 2.5mg. I was in turmoil, I felt that if I was still getting pain and stiffness at 5mg, what was the point of taking them anyway, but the pain stopped me from stopping them all together as I knew I just wouldn’t be able to carry on at work. So I stuck at 5mg, knowing that I had pain, but that it was less than I would if I wasn’t using them at all**.

After seeing the obstetrician, I made the decision to try to wean myself off the steroids, and have accepted (reluctantly) that this may mean I have time off work if needed. I wanted to come off the steroids if I could anyway, as I wasn’t 100% sure they weren’t giving me muscle and tendon pain (or was it just my tendons with synovial linings that were giving me the jip and therefore all part and parcel of the RA… the trials and tribulations of being your own therapist!), which to be honest I could do without, especially with a little baby on the way. Plus I’ve got to stop them eventually, therefore, I feel better now, with it maybe effecting my work, than when I have junior to look after, love and enjoy!

Essentially, this is me starting to consider my life and health over my sickness from work…. A big step for someone who abhors being off work.

So, my regime has started, my week on holiday was my last week of 5mg/day. I then started to alternate 5mg/2.5mg for about 4 days (I have a short time frame if I’m to get off these drugs in time for my obstetrician to be happy!! 28 weeks… I’m currently 24 weeks!), I’m now at 5mg/0mg… the first few days of 0mg weren’t too bad, and some days even the 5mg days were worse (possibly activity related), today has been a 0mg day… I was hoping to go swimming, but I have postponed that until tomorrow – today was tough. I have a big fat swollen knee, and a very painful left ankle and midfoot… but it has been a busy days at work too. Hopefully tomorrow will be better!

The plan is, to break my 5mg days down to 2×2.5mg initially, then go to 2.5mg/0mg, and a few days before week 28 to finally get to 0mg/0mg……

That’s all well and good, but I then have to manage with that until week 36 until I see my obstetrician again to start making birthing plans.

I am so grateful for my other half, he is being so helpful and understanding, and equally isn’t treating me like a patient! I still have to ‘do’ about the house, there’s no being waited on in this house! Which I might moan about at times (in jest), but I am hugely thankful… I don’t want to be sickly, or get into a ‘sick’ role, I just sometimes need support, and that I have in abundance (and the fact that the dishwasher, washing machine and dryer get filled and emptied now makes my life a little bit happier!!).

**I’d love to hear if any of you have any thoughts on the steroids and muscle pains/tendon pains and coming off the steroids after an extended period of time? Part of me keeps wondering if the battles I’m having now are a little of my own making for taking the easy route?

 

Me at 23 1/2 weeks...

Me at 23 1/2 weeks…

Being pregnant…

I’m in the midst of writing a post about food… It’s taking some time, probably because I’m still trying to work out what it is I’m trying to say!!

However, I just thought I’d post a quick note so I can look back and remember what I was feeling!!
I’m loving being pregnant!! 😀 I’m 19 weeks (21 to go…!) so nearly half way. It does seem to be taking forever, but I know in November I’ll look back and wonder where the time went!!

If it wasn’t for the pain, (which I won’t go into too much here…) it would be a doddle! I’ve had a bit of nausea, but nothing too dreadful, and yes I was worn out in the first 3 months… Plus the addition of worsening fatigue due to the sudden lack of meds, but overall, it’s not been tough at all… Now I know it’s going to get harder, and in another 19 weeks I might be thoroughly fed up with it all, but so far, so good!!

Bump is coming on nicely, some of that may be the food I’m so in love with mind you, but everybody I meet keeps telling me how tiny my bump is for 19 weeks, which makes me think that, despite my reduced activity over the last year due to my lack of meds and increased pain, perhaps my core musculature wasn’t as bad as I thought it was!!* I’ve always been pretty content with my body, the usual gripes everyone has, but overall I have liked myself, and I know I am lucky for that (plus grateful to my mum!), but at the moment as I see it changing, I love it even more!! What an amazing thing nature is!!

Anyhoo… The cricket highlights are on and it’s nearly bed time!!

🙂

* it certainly isn’t as good as it was, but the dog walking and cycling and general busyness at work must have maintained something!

Peaks and Troughs of Activity

As a physiotherapist I always prided myself on my ability to empathise with the patient. To be able to talk on a level about chronic pain and pacing, the do’s and don’ts, the reasoning behind it, and the need to avoid peaks of activity followed by troughs of inactivity and pain and the downward cycle of deconditioning.

I felt able to use myself as an example of it working, and of pacing’s benefits. But perhaps I never appreciated how much of a pivotal role my pain management played in my being able to achieve appropriate pacing.

Of course, I knew how important pain medication and pain management was with pacing. I regularly encouraged patients to go back to their doctors and consultants to discuss better pain management. But I think I lost sight of how much my medication was helping me! Until I had to stop taking it!

Over the last year, since stopping the methotrexate and just being on the Etanercept (Enbrel) my pacing has been POOR! My lifestyle and my pain levels don’t match well at present, and it has taken me a whole year to be able to look back and appreciate this… I am a rubbish patient, I have always been a rubbish patient, I have never taken my advice well, but now I wonder, if it’s about time I started to listen to myself.

In the past year my activity levels have plummeted due to the pain and exhaustion of a full day at work. I have managed little more than two dog walks a day, and that has now dropped to one more often than not. I have deconditioned. I am now feeling the effects of the deconditioning – Right Achilles tendinopathy, Right anterior knee pain, the list could go on – hills and steps have become my nemesis…. I’m 29!!!

For the last two months I have been giving myself exercises to combat these secondary problems… but like a bad patient I have done them infrequently, and therefore they are useless.

I feel that at the moment, work is my peak of activity, I have exhausted all I have by 4.30pm, and my trough of inactivity is the evening. My feet throb from being stood up all day – I want to sit down, then I seize up and struggle from the chair, my hands scream from holding, supporting and facilitating people all day – I don’t want to hold or touch anything in the evening. And the rest of me aches and feels heavy and difficult to move.

I know however, I have to start doing something to break up the inactivity of the evenings, I have loads of options easily to hand… cycling, swimming, rowing – all low impact, with the benefit of strength and cardiovascular fitness. Of course I know this! I’ve suggested those and many other activities to hundreds of patients… I’ve just got to listen to my own advice!!

So… the plan is… well, the plan is still forming! But I’m going to, I have to, get more active in the evenings… Ideally I’d get to rest a little in the day, but that’s not going to be possible, so instead I have to manage my time in the evenings better, relaxation can’t be on the settee… as I can’t get up again, and going up stairs to bed becomes a 10 minute ordeal. Perhaps going swimming, or pregnant yoga, or out on the bike… my problem is, I’ll miss my pooches, I have to cook dinner at some point… and will I burn myself out? People keep telling me that as a pregnant woman I should be getting some rest… it’s going to be a work in progress!

In the meantime, I’m waiting for an appointment with a colleague, so I have someone else telling me this stuff!! It’s a lot harder to ignore someone else, it’s very easy to talk myself out of doing things! Although that’s a trait I am working on.

And finally, what better motivation to stay in shape and find ways of pacing myself now… because in six months’ time, I’m going to be looking after someone else too, time management is going to become imperative!! And I know myself, if my muscles weaken, and my joints don’t get their support, on top of additional weight (both baby and the odd cake!) it’s only going to make my life harder!!

 

Welcome to Wordpress!!

Hi there!! So please bear with me, this is my first ‘blog’!!

I’m Nina, I was diagnosed with Rheumatoid Arthritis in 2007, I was 23, it wasn’t a huge surprise to me, I had just finished a physiotherapy degree, so I was pretty clued up on the early symptoms, so when I went to my GP with pain and swelling, I think he was more surprised than I was at the blood results. I was, however still pretty devastated, which thankfully once on the right mix of meds, ebbed away.

I didn’t ever think about blogging about RA, I didn’t have much to say, I was well controlled early on (after a rather shaky start**), and had a career and a life to be getting on with!! In fact I didn’t know much about blogging until very recently (and I still don’t know much at all!) when I met a colleague who was blogging about her life here in the UK, following a move from South Africa. This piqued my interest… but only over the last 3 months have I really seriously considered writing my thoughts down.

So what happened 3 months ago? Well, it actually started last May (2013). When my other half and I decided we were finally as ready as we were ever going to be to start a family***. I was, at the time, pretty well controlled by Methotrexate 25mg, and Etanercept 50ml injection once a week, and to start the planning of our little human, I stopped the Methotrexate.

Straight away I noticed a difference, but I put up with, and managed myself with the addition of NSAIDs (Non-Steroidal Anti-Inflammatory Drug) until October. I had decided to be off the Methotrexate for 6 months, rather than the 3 months suggested by the consultants, because I wanted to be sure it was clear of my system…. (I think if I were to do this again I will look a bit more thoroughly into the evidence behind the recommendations, as six months was tough!). In October I got in touch with my consultant and the addition of Prednisolone helped me cope enormously! Steroids really can be magic…. Forgetting about all the side effects for a moment!!

Along came February… and the news we were all hoping for!! I was PREGNANT!

So here we are, 15 weeks in, due in November… all meds stopped 15ish weeks ago… No steroids, No Etanercept, No Methotrexate… exhausted, worn out, and in pain.

And this brings me to why I’m here, I have been looking for an outlet for all my thoughts and feelings at this time of my life (which I have A LOT of!!) and hopefully connect with other people that might be going through the same dilemmas, highlights and lows. Since deciding to take this on, I have discovered that there are LOADS of blogs about RA, and I am only just beginning to scrape the surface of them… I wish I had known about them over the last 7 years of my life… I might be far more educated and informed than I am now…

So, my fist blog completed…. Let’s hope I manage a few more!

 

 

** Initially I was prescribed Sulphasalazine… which did not agree with my liver AT ALL!! So apart from being in pain, I was very unwell, but thankfully, a change of hospital, consultant and DMARD (Disease Modifying Anti-Rheumatic Drug), and I was well on my way to being very well controlled for the best part of 5 years

*** well, add a little human to the house hold, as there is already the two of us, two pooches Riva and Zeus, and two Yellow Bellied Sliders George and Gonzo – photo’s to follow!

 

Waiting patiently on a picnic break in the hope of a buttie!

Waiting patiently on a picnic break in the hope of a buttie!