Increased knowledge leads to so many more questions!! I guess I’ll just keep reading!!

I have always been interested in health… And my understanding of health and how to be healthy has evolved over time… More recently it has evolved exponentially in my personal attempt to manage my RA naturally. It is a brilliant and enlightening journey, and I wonder how I would be managing presently, had I not changed my diet so drastically back in august (see this previous post).

This new journey I am on has made me very aware of so many things that could be affecting my health… But unfortunately this knowledge adds to one aspect that greatly affect my health… Stress!!!

I know that stress is a huge precursor of all ill’s! Put in a very poignant post here by the Paleo Mom.
And now I’m not at work, my stress levels are vastly reduced! But I have ‘that’ type of personality! If I’m going to do something I want to do it perfectly (but this is unsustainable and leads to stress!) if I’m going somewhere I CAN NOT be late (although, weirdly I often am (only minutes, not really late) but I stress and get very grumpy at the same time!)… So I am constantly trying to battle daily chronic stressors.

So where is this leading? Well, now, it’s not just me is it? Now, I have a beautiful baby boy to look after and set up for life… And of course in my mind I must do absolutely everything to ensure that I facilitate his healthful growth perfectly!!

This means that in my head I am constantly worrying about these many external ‘things’ that can be and are detrimental to health…. EMF, Plastics, heavy metal exposure, diet, vaccinations and so on…..

EMF, electro-magnetic fields… There’s lots to be said on this topic, and some very clever people know some very clever stuff and write about it lots… But to summarise see this blog post by Phil…. And this pod cast touches on it about 20 minutes before the end. How can that not make you worry about your child?! (Even just re-reading Phil’s post now has made my tummy flip)…And the worst thing is? EMF’s are everywhere… So even if I turn off all our devices and wifi router, next doors is still there, and so are all the devices at work, in hospitals, in every building we walk past… So how much of a difference is me turning off my devices?? And how realistic is it? They can be off, but not all the time, else I wouldn’t have bought the thing. So they will still be on, and as Seb is always near me, so therefore, he is near these wifi devices working away…. And lastly, I’ve used them most of my adult life…. So the damage is done, and it may not show in Seb, but what about his children… It will effect that far down the generations. Of course I’ll do what I can, but i can’t control the external factors, so I am working on trying to NOT worry about this health hazard… And breath!

Plastics… So now there’s BPA free, but what else is in plastic that we don’t yet know about that could be making us ill… That will be the next ‘X’ free product? The answer? Don’t use plastic….! Ok, I can work with that, but it takes time to transition. Yes I could bin all my plastic storage containers, and replace with glass/Perspex/steel… But there’s a cost implication here, and yes I’m a perfectionist, but I’m also… Let’s not say tight, but frugal. So, I have stopped heating up anything in plastic, it always gets put into a pan and warmed on the hob… But still Sebs bottles (I’m breast feeding, but he does take some expressed milk from a bottle so family can help out with care if needed) are plastic (and BPA free) and there’s no getting around that.

Heavy metal exposure – from all sorts, but the main thing that has been worrying me is water… To filter or not to filter, to filter drinking water, or to filter ALL household water?

Vaccinations – so much conflicting information! Here’s a pod cast from this past week by Paleo Baby that looks at all the evidence that’s out there… He’s had his first set, I don’t feel informed enough to defy medical advice, and I had my vaccinations (although now have an autoimmune condition) and his dad had his vaccinations (although he got all the illnesses vaccinated against!!)… So what should I do… or have done? I guess I’ll keep reading, feel guilty, then work on telling myself that there is no point feeling guilty, I’m only doing my best… and maybe I’ll feel better informed to make a decision I’m confident about for the next one!!

Diet – when seb eats with us I will ensure he eats the best food he can. But what about when he’s at nursery, grandma’s, school…. Arrgghh!!

So what do I do?? I guess I just do my best, limit the ‘bad’ stuff as much as I can, and know that I have done everything in my power to love and protect Seb as well as I can. The added stress I put on myself probably isn’t doing either of us very much good…

So we’ll limit wifi/mobile devices, we’ll eat well, go outdoors often and play lots… And hopefully instil a healthy life and attitude in my beautiful boy to live a long and happy life!

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The year of 2014… The beginnings of Seb, and a rocky ride with my RA into 2015

The year of 2014…
I know it’s a little late to be trying to recall all of what happened in 2014, but I thought I’d try!! As I’m just sorting out my diaries and calendars, and about to throw out the old calendar…. So here goes! (I guess if it didn’t go on the calendar (which many things often don’t!) it won’t get mentioned here…)

January…I can’t believe how long ago this journey started! I had my implant taken out in November of 2013… that barely feels like yesterday! And so, from then on Seb was part of our thoughts.
My friends Alison had her baby boy Ethan on the 14th January, and Jo and David had their twins Leon and Logan on the 18th January.

My mum and dad visited the Lake District, and we joined them for a walk around Ullswater:

Mum and Dad on the Ullswater Steamer

Mum and Dad on the Ullswater Steamer

Ullswater from the Steamer on a cold January morning

Ullswater from the Steamer on a cold January morning

I began my acupuncture course, and generally felt like I was working constantly, what with working weekends, and the course taking up two weekends as well…. What a contrast to this January!! I also attempted to do the photo-a-day challenge by Fat Mum Slim… but managed less than 10 days…. Excellent start to a New Years Resolution!!

Photo a Day Picture...

Photo a Day Picture…

February continued in the same vein as January, with acupuncture courses filling my weekends, working and being on call…

March brought Miranda at Manchester with Jan and Karen… Such fun! And a little break away, just the four of us to Ingleton for fresh air, good food, and walking (Seb was now more than just a thought, and was quietly growing inside me, and we had just found out!!)

Ingleton hol March 2014 118

April was pretty quiet, Zeus went to a fun agility show in Sandbach and did very well (of course!),

Zeus!!

Zeus!!

and Riva debuted in her first champ show (the HWVA)… she behaved very well and didn’t come last!! Zeus and Riva met up with their sister and half-brother there too…

The Family!! Happy to say our two are the ones not needing to be held in place!!

The Family!! Happy to say our two are the ones not needing to be held in place!!

May brought Daisy’s Christening, in which I did some photography, and boy did I feel it in my shoulders after that!

Ste and Daisy!

Ste and Daisy!

Jan and Karen came to visit, and Bill went to an all you can eat Chinese with the family… and ate steak and salad! Poor old Riva had her hysterectomy too, and we stayed home and cuddled that weekend, while Andrew started the first of his Lakeland Trail runs up in Staveley.

Staying at home in the beautiful springtime weather!! (Riva was hiding in a shady bush!)

Staying at home in the beautiful springtime weather!! (Riva was hiding in a shady bush!)

In June we had Sebs’ 20 week scan… and chose not to find out if he was a boy or a girl… best decision ever!! And then off we drove all the way down to Lands End with the dogs and camping gear for a brilliant camping holiday with beautiful weather… I’m just gutted I couldn’t eat much of the fresh seafood while I was there… or drink the local brew!! Bad timing really, but still a lovely holiday!!

Truely the best was to spend a holiday!! Camping, sun, sea and sand!

Truly the best was to spend a holiday!! Camping, sun, sea and sand!

By this point I had also started my blog… what a journey that has turned out to be!
July saw Andrew continue his Lakeland runs, and I went off to the big smoke with the family on the train to see Monty Python at the O2 Arena which was brilliant!!
We looked after Daisy in August whilst Ste and Annette went to Blackpool to watch Mamma Mia, the following weekend I went down south with Layla in her campervan to Boomtown,

boomtown-line-up-2014-webunfortunately my RA was getting really bad by this point and I had gone off sick once already. The pain left me feeling low and lacking the ability to fully enjoy the experience, as walking, siting, standing even eating was incredibly painful, add that to being 6 months pregnant and you get one unhappy bunny. So sadly, looking back, I left early with Lois and Tony, but all in all it was totally the right decision. Due to the levels of pain I was experiencing, I took the plunge and went Autoimmune Paleo, and cut out Gluten, Dairy, Sugar, Nightshades, Legumes, Pulses, Nuts and Seeds… And the improvements went from there!!

By September I was feeling well enough to return to work, albeit in a non-clinical role, but it was good to get back in to the work place and feel useful and able again. My Birthday came and went rather uneventfully, taking a walk in Goyt Valley with the pooches, and going for a meal with Andrew to the Hanging Gate before staying over at mum and dads.

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Taking a break at Goyt Valley

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My diet was so miraculous in its pain relieving, that I attended an open day at the College of Naturopathic Medicine on the 1st October, which was really inspiring, but due to Seb’s imminent arrival I decided to not go ahead this year… But it has really sparked an interest in learning more about this area of health.

36 weeks pregnant... 2 more weeks and Seb arrived!

36 weeks pregnant… 2 more weeks and Seb arrived!

The following week my Maternity leave began, and right on cue the little man was born two weeks later on the 26th October!! What an amazing experience!! The body really is a pretty amazing thing, and I am so proud of what I have achieved in not only growing and birthing the most perfect little boy… but also in continuing to feed him all the nutrients he needs to continue to grow into a gorgeous bouncing little blue eyed boy…. I love him so much!!

Just a few hours old... My beautiful baby boy!!

Just a few hours old… My beautiful baby boy!!

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November saw the last two of Andrews Lakeland Trails up Helvellyn and Ullswater at the start of the month, and we finished the month by going to the Stampers house warming do. In between I was obviously preoccupied with learning to look after my baby, and he was exceptionally well behaved at the Stampers! Here are a few lovely photos from this busy time… I’m just bursting with pride, so sorry about the over kill!!

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In December Seb attended his first wedding (well, evening do at least!)

First Wedding

First Wedding

He had also been attending baby groups since November, and had his first Christmas Party and met Santa on the 13th.

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Christmas celebrations!!

Christmas celebrations!!

Sadly, on the 21st December his cold got progressively worse, and we were admitted to Preston Hospital with Bronchiolitis and had a 4 day stay, getting discharged on Christmas day. Santa popped by to visit him and brought him a few presents on Christmas morning though so he wasn’t forgotten!!

Seb and Santa

Seb and Santa

Finally we saw out the year at our house with a few friends, and Otto!

Happy New Year!

Happy New Year!

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The family portrait!

In summary… I’ve had a great year, not least because not only has the arrival of Seb been just the most amazing and perfect addition to our family, his conception has led me to get off my bum and do something proactive about my autoimmune condition!! I thought I was being proactive… certainly in a way I would have been pleased with were I a patient of mine… but since going off sick, and reading constantly about nutrition and healing, I have learnt soooooo much, and I have now realised that by taking the medication and going about my life without a second thought, was in fact insanely passive!! I have taken control of my body now… yes things aren’t perfect… yes I still wake feeling pain, yes I still can’t walk up Helvellyn, yes I still feel exhausted some days and want to just sleep… but those feelings are soooooo much less than they were, and the positive feeling I get from knowing that I am doing the best for my body and the best I can for my baby really does make it feel so worth while… and dare I say it? Easy!! Who needs cake when you can have health!!

Here’s to an ever increasingly healthier 2015!!

Elimination Diet… Where I’m up to – A Summary!

My last post Elimination Diet…. What have I been eating?! received so many positive comments from Facebook, and additional questions posted on Facbook groups, that I feel perhaps I ought to expand a little! I am by no means an expert in this… this is a little personal experiment. There are things that I haven’t done perfectly, and there are things that I know in time I will need to adapt and adjust, and also, what works for me won’t be the same for you… that is the point of an Elimination Diet, to find out what is your own personal triggers.

Elimination Diet

I stated in A New Start with the Diet what I had decided to eliminate, this included: gluten, dairy, Sugar, Additives, Legumes, Citrus Fruits, Seeds and Nuts, Nightshade vegetables, Meat (excluding fish and turkey/wild game), Eggs, Most drinks!, Spices and Condiments (due to the inclusion of seeds, sugars, gluten etc. – therefor Himalayan Rock Salt, fresh herbs and dried leaves of herbs allowed). I decided on these things from reading The Paleo Approach, and this website which I found in the files section of the Facebook group Rheumatoid Arthritis Managed Naturally.

Pretty restrictive, but well worth it!!

So what have I learnt so far? Well… Initially I don’t think I ate enough. Now to be honest, it wouldn’t have been a problem, as it probably was enough, just not for a pregnant woman in her third trimester!! But this didn’t last too long, as my midwife noticed a high proportion of ketones in my urine after a fortnight of starting the diet. So how did I rectify this?? I added more starchy vegetables – butternut squash, sweet potato, beetroot… plus exactly what I had been eating on the first week of my elimination diet. The next urine test was spot on.
Other possible reasons that my urine test was slightly off that first week… was my appointment was at 9am on Monday morning, and I probably hadn’t drunk all that much before the test, therefore dehydration can affect ketone levels in urine. And also, along the lines of not eating enough, that weekend I had eaten out on both Saturday and Sunday, and generally been quite active (totally unheard of before when I could hardly move!!!).
Eating out is a bit of a problem, and I don’t mind too much as I had, more recently begun to feel that eating out was becoming too frequent, it was taking away the special-ness of going out for a meal for a special occasion. Plus, not eating out saves money… which can go directly into ensuring that the food I’m buying in for our daily meals is as good as we can afford!!
However, eating is a really social event, and it is nice, when friends are visiting, or there’s a get together that you can go out and still eat within your restrictions. Unfortunately, so far I have found that I tend to get one choice of fish or meat with a plain salad, or a plain portion of vegetables. As I go along with my reintroductions, and my diet 90% of the time is balanced and managing my inflammation, I am sure that I will have to be slightly less restricted in a restaurant, but for now it just isn’t worth it!!
In the meantime, I am going to start a little review of each of the places that I eat out at, looking at their choice, service, and food in general, as it’ll serve as a little reminder for me when it comes to having to pick somewhere to go out for food if the need arises!
Reintroductions
My reintroductions have been slow, and I have intended that because I want to know exactly what I can and can’t eat!! I have also so far only really reintroduced some ‘safe’ foods, with a view to building up my diet to an Autoimmune Paleo (AIP) type diet, trying to follow The Paleo Approach as closely as I can, food sensitivities (if found) allowing. The reason I’m aiming for an AIP diet is because The Paleo Approach book made sense to me, and I do eat meat!! And I like eating meat! A lot of other diets move towards a less ‘meaty’ approach, and I felt, for me, I wanted to try this… if I found that I couldn’t tolerate meat through my Elimination Diet then, of course, I would have addressed this and looked towards getting my nutrients from other sources, but everyone has to have a Plan A!!
So far, meat (grass fed Lamb, and grass fed Beef (as of this weekend), free range chicken, and wild game/duck etc.) has been good… No reactions… YES!! So fingers crossed, I can look to follow an AIP diet fully in time.

Eggs and almonds aren’t really in the AIP remit, but I thought I’d give them a go because of their usefulness in baking, and other cooking… Almonds seem OK (I eat in proportion anyway), eggs however didn’t go so well… but because I was doing a detailed Food diary, I have been able to look at the possibility of other possible reasons for my flare – so I plan on trying again with eggs on a clean day, and if the same reactions occur, then I’ll know!

I had my 30th Birthday in the midst of all this, so I did cheat a little for a few days – keeping within an AIP diet – but I did a bit of baking, and eating out once which meant on that weekend I had lots of new foods, and yes, I did feel a bit rubbish following this weekend… I just don’t know exactly weather it was the flax seeds, or honey, maple syrup in the baking, the extra sugar from the baking and eating lots of fruits rather than keeping a balance, maybe the yeast in a bullion that made a gravy… or any of the other little things that sneaked in over that weekend.
But all in all, it was nice to relax for a couple of days with my family and by eating clean the following week my fatigue and pain ebbed away quickly. And I think this is important!! It is important to be dedicated to your elimination diet to work out what your triggers are, but it mustn’t take over your life so much that it makes food a misery or a chore! Food is delicious, and especially so when you know it is healing your body!!
I look at reintroductions as an exciting time of the week… it’s a day to find out if there is one more food I can eat!! And it’s like an adventure, a discovery!

Supplements

This is my weakness… I’m only just getting my head around the nutrients that I am trying to balance in my whole foods… let alone where I’m deficient, and what will benefit me in long or short term. This is my next goal… I am going to wait until little junior is out of me though first, because even though I’m sure most supplements would only benefit me and the health of my baby, everything says ‘if you are pregnant or breast feeding please consult with your doctor’… and unfortunately when you do this, they have no idea of any impact on me or my baby… so I’m going to wait. This gives me time to continue with my reintroductions and get to grips with that anyway.
I’m excited about the addition of supplements and how it will be another piece to the puzzle, I think I may need a little extra help however, and I plan to speak to a nutritional naturopath when the time is right for guidance.

Support
I have been really lucky that my other half has been supportive of this adventure of mine… but I guess why wouldn’t he be?! He doesn’t need to help me on and off the settee anymore, or get woken up in the night to help me turn over and sort out the covers! I can come out on the dog walks, and I’m 100% happier, which makes the household a happier healthier place! And I’m doing most of the cooking (I’m going to have to try to train him back up to AIP cooking sooner or later though!!). Plus… He is very into his sport and fitness… and although we ate pretty well before, always eating our 5 a day, minimal bread or pastries, rarely potatoes, with fish a regular part of our diet… we weren’t eating CLEAN! So now we are… he can’t stop looking at the results he is seeing in the mirror… which is a constant source of amusement to me!

On wards and upwards!

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.

A lesson in over doing it!

I’m planning a proper blog about how my elimination diet has gone/is going… But for now just a quick note on that. It seems to be going pretty well!! And I couldn’t be more pleased!!

Now… A little reminder to listen to your body!! Yesterday, joints felt good, but generally I woke feeling pretty tired, at 6am and I had had a busy week so far… But once I was up and dressed… I ended up mowing the lawn, doing a big shop (to Costco for baking ingredients, and farm shop for special stuff), then when I got home I spent nearly 3 hours stood in the kitchen preparing lots of fruit and meat for the days ahead… In an attempt to make life easier for the following few days… Forgetting about today!! 17.00 came, and I finally sat down…. Uh oh! Swollen knees, fingers and a very painful right shoulder and neck… Off to bed at 21.00!!

I think my knees were down to 1) being on my feet ALL day! 2) wearing shoes that I’ve not worn for years due to my feet being to swollen!!

My shoulder and neck was due to lifting the mower tub into the compost bin… The lawn seriously needed a mow, so I did this A LOT!! and the grass was a bit damp!

And hands just down to everything, the mowing, the chopping, the kneading etc…

I’m pleased that I felt capable of all the above, but I knew I was tired, and I didn’t rest, I certainly didn’t pace myself… And I paid for it! Today my knees are much easier, but still sore right on my patella’s. Hands gradually easing, shoulder gradually easing….. Today’s to do list….. Well, it’s long, but I will just get what I can do done!

Priorities… Baking (which I am trying as we speak)… As it’s my birthday tomorrow!!! And as much as I’m loving my new diet… I need something delish to celebrate with!!

Calling all Raynaud’s and Scleroderma Sufferers (or anyone else thats interested!)

See the flyer below for the Shine On, Raynaud’s and Scleroderma, RSA’s 2014 Annual Conference being held at The Mercure, Abbots Well Hotel in Chester on Friday 5th and Saturday 6th September:

Shine_On_Flyer

And if you are interested, here’s the conference booking form:

Conf Booking 2014 FINAL-2

You have got until August 29th to book your place.

If anyone does go, let me know what you thought!!

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!!

A Tough and Emotional Week…

It’s the Friday afternoon, of a very tiring and emotional week. My last post stated ‘but it will get better’… The toughness and emotion have been present all week, neither better nor worse, the outcome of the week, I think all though a hard one for me to accept initially, is probably the right outcome… So I think things will get better!

Last week I self-certified a few days off sick because my joints just wouldn’t let me keep going. Back to work on Monday… a difficult decision in some ways as my very supportive boss said as I left mid-morning on Wednesday, ‘take all the time you need and make sure your right before you come back, don’t rush back’. I appreciate the sentiment, but when every morning you wake up and feel rubbish, work or no work, how do you tell which morning is the right morning to go back? However, Monday came around, and I felt I should try a new week.

Tuesday morning I had a Women’s Health physiotherapy appointment that I had arranged whilst off, she was supportive, but as I know too, there is little she can really do. She can’t cure my RA, but she did offer hydrotherapy and acupuncture, which I have accepted. I’m happy to try anything that might help ease the pain or stiffness. I have been doing my own hydro of a fashion when going swimming, but it’s also nice to get other therapists ideas on exercises/rehab.

Wednesday was a day off (using my annual leave to break up the weeks), which worked well as I was exhausted after Monday and Tuesday, and hydro is on a Wednesday at 13.30 which would have been really awkward if I had been at work.
Hydro was lovely, very gentle, and a lot less than I would do on my visits to the pool (but at the cost of £3.80 per swim I’m afraid I feel I have to get my money’s worth!!), but it was great in the warm water to take my joints through their full range of motion with very little pain. Plus as there were ladies there with pelvic girdle pain there were core exercises as well which you can never do too many of!! Now granted… getting out the pool did suddenly make my body feel twice as heavy, but it had worked wonders on the lovely water retention that has come to fruition over the last week (Just to add a little extra size to my already fat feet…!! To think I once wanted to be a foot model!).
The physio is going to add acupuncture to my treatment plan for next week as she didn’t want to overdo it in the first session. So that will be interesting, having never had acupuncture as a treatment!!

Thursday, back at work, feeling some benefit from having the Wednesday off, but still, as every morning is proving to be, a difficult and tired start to the day.
For the last week I have been sleeping in the spare bed, it has a memory foam mattress, and space! Which in this beautiful English summer weather, is worth its weight in gold!! Because by ‘eck this little baby is making me warm!! Plus the fact that I am trying my best to sleep on my side, which is very uncomfortable for my shoulders and hips no matter how many hot sweaty pillows I use in all manner of places to prop myself up! So every night without fail, I will wake up several times to sit up and turn onto the other side (rolling is impossible at the moment). This swap of beds has made for better night’s sleep for both of us… but it is weird. We don’t quite feel in the right age range to be having separate bedrooms just yet… so hopefully this won’t be a permanent thing!!
Anyway, back to work… I had a very minimal case load in comparison to my heavily burdened colleagues, which is due to their lovely support, but it does make me feel pretty useless and quite guilty. Although I do understand that if I wasn’t there at all those patients would be added to an ever growing list of patients for my long suffering colleagues to deal with. So I’m not totally useless… By the by, I got through the day. Exhausted, wiped out, fog brained, done in. The drive home was weary, and I was finding it difficult to keep my eyes open.
At home, I vegetated on the settee, despite the most beautiful summer evening (we bought out first set of garden furniture this spring – I was so excited – but I have barely used it as every evening all I want to do is go to bed!! Last year we had had barbeques coming out of our ears, using dog crates and camping chairs as furniture!!). I had a weep and a chat with Andrew about how I was feeling, and at 8.30pm we went outside to watch the dogs in the garden… that cheered me up.

This morning arrived, and I knew I had my 25 week midwife appointment. So after I had eaten my breakfast I wrote down the main things that were making my life hard (picture below). I felt I had to do this, as I knew I’d either forget (fog brain/baby brain… it’s a wonder I know how to spell!), or I’d be too upset to get the words out. For me at the moment, the worst feeling is that I don’t have the mental strength to keep going in to work and focusing. The physical side is hard, but as anyone who has RA or any other chronic pain problem will say, the pain is a given so you just keep going, working through it. But once the mental toughness has slipped, the pain becomes too much to manage.
The mid wife was lovely (I’ve not seen the same one twice yet and some have been better than others!), and very supportive, (yes I did get teary and upset). Everything baby wise is going swimmingly. But she immediately made me an appointment with the GP so I could discuss taking some time off. The GP (a very well dressed, highly made up, hard faced, slim woman) was less supportive and comforting. Very matter of fact and (I felt) suspicious. But after some rather hard questioning she signed me off for 2 weeks, and prescribed me some ibuprofen gel (10%).
I felt emotionally drained. So after letting work know, and again getting a lovely response from my boss who has been nothing but supportive the whole time I’ve been pregnant, I went home and slept!
So let’s see how the next fortnight goes… I worry I’ll have the same dilemma as I did this Monday. Every morning is tough, how will I know if I have enough strength in me mentally as well as physically to go back to work, and how will work feel if I keep popping back for one or two weeks here and there?
I’m not 100% sure about using the gel… especially not if I’m off work. I prefer to manage my pain in other ways if I can. Any thoughts on using Ibuprofen gel during pregnancy?

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A tough start to the week… But it will get better!

Last Wednesday I went home ‘sick’, I stayed off until Monday, I decided for the first time in my life I wouldn’t rush back the next day. I felt much better than last Wednesday, but it’s very difficult to know how ‘well’ you are when every morning is so difficult, and every day so dependent on the activities that it holds.

Work was ok, a good distraction, but generally when I’m distracted, I forget quite how much I’ve done. It was a busy day Monday, and an even busier Tuesday. And it’s only when I sit down at 3/4pm to do my notes for the day that I realise I can’t get back up again, and by 4.30pm my hand is fixed in the pen holding position! Doh… Maybe I’ve done too much again. But I feel so guilty that I already have a light case load, because as a team we are so stretched at the moment with staff shortages, I already feel like I’m not pulling my weight.

Tomorrow is a day off, I have started to use my holidays to take days off in the week to break the work up…. Hopefully this will work… But right now, as I struggle to type, struggle to move on the settee, struggle up the stairs, struggle to hold my tooth brush and struggle to get comfy in bed, I don’t know if one day is enough. Let’s hope so!

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Zeus and Riva this evening with their birthday tea… 3 years old today! Sadly I haven’t made it out on their birthday walk.

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…

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