Time flies when your a mum!

Hi there!! Just a quick update…

So, firstly… My how times flies!! I don’t know how mums do anything other than cuddle, feed and socialise with their yummy babies!! 🙂

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Update on my post partum flare… I got back to my clean eating and have stuck to it since getting back from hospital!! It has most definitely helped, the aches and pains have eased, but I am still managing a certain amount of pain.

It’s so difficult to be able to balance all the variables… Last weekend I did lots of dog walks with Seb and Andrew… And my knees blew up like balloons. Epsom salt baths sorted those in 2-3 days.
Over this week aches and stiffness have crept up on me in the neck and shoulders – from lots of lifting an ever increasingly heavy chunky monkey (Seb.. Not Andrew!!), and broken/disturbed sleep.
And this weekend I did some silly stretching of my right wrist to try to avoid it stiffening up at a Christmas party… But instead, just flared up my Oarsman’s Wrist!!! This I have managed with mag oil, avoiding aggravating it, and today my friend did some acupuncture… So fingers crossed… Although not, as that hurts!!

My new addition to my natural management of my RA is magnesium… In the Epsom salt baths and mag oil (homemade!)… I’ve only started this week, and there is SOOOOO much to learn about minerals and their balancing! I haven’t done any testing yet to see what my levels are, but since a huge proportion of the population is deficient in magnesium, it’s my first port if call!!

Next on my list to add are: fish oils, essential oils, kefir/kombucha, fermented veg… (Bought my mum a book on fermenting and going to set her the task of keeping me stocked up!!! I just don’t have the time or the wrist strength for all that veg prep yet…!!).

There’s lots to consider adding to my routine, it’s quite overwhelming… But I remember how overwhelmed I was before changing my diet… So as long as I take things one at a time, surely I’ll get there… I could just do with a good straight 10 hours of sleep…..!!!! Ha!! Never again I suspect!! (But I don’t mind, because my little boy is perfect!)

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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!

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!! 😉

Feeling good!!

Just felt the urge to post a little yippee!!

It’s 10pm on Thursday evening, and today I have: fed the house their breakfast (AIP elimination friendly), been swimming (20 lengths plus exercises and stretches), gone shopping (food plus a pair of slippers – essential!), mowed the lawn, done some agility training with the dogs, made tonight’s tea and half of tomorrow’s tea (AIP elimination friendly) done a very small bit of hallway decorating (Andrew has done 95% – but I like to feel I’ve helped!!), had a bath, and still I’m able to walk up the stairs one foot in front of the other… With minimal use of the wall for stability!!!

Now, don’t get me wrong, I’m by no means pain free… my main complaint today is a right elbow that won’t straighten! (And sore knees getting off the toilet!!).

But to manage all of the above in one day…?! It certainly wouldn’t have happened two weeks ago… There certainly is something in the water (or should I say food!!).

I’m so glad I took the plunge to eliminate and scrutinise my diet… Here’s to a healthy future!!! 😀

Acupuncture… Wish I’d had my tutor as a clinician!

In a previous blog I planned to do a blog about acupuncture and/or hydrotherapy, adding in some research, and I did start looking into the papers… but for some reason my heart just wasn’t in it! And if you have ever tried to read a research paper when your hearts not in it you will know that they are the perfect antidote to insomnia!!

 

So instead I will just give you a run down of my personal experience! I’ll try and give you a brief history of acupuncture first from my notes taken whilst training in acupuncture earlier this year, unfortunately I haven’t really had the opportunity to practice my acupuncture since the course… and you certainly can’t acupuncture yourself effectively!

 

There are two recognised types of acupuncture TCM (Traditional Chinese Medicine), and the western approach.

TCM is known to stretch back as far as 3000 years, it is a holistic concept of treatment and a recognition that the body has the ability to return to a balanced state of health/repair itself given the correct stimulus. TCM aims to balance ying and yang (two opposing energies), takes into account the 5 elements (Fire, Earth, Metal, Water and Wood), and along with assessing the pulse, and tongue (and a few other bits and bobs) TCM practitioners try to gain access to the energy that circulates in the body to restore balance and subsequently healing.

 

However, the NHS can’t really work to those guidelines!!! Western medicine needs evidence based practice, it needs proof that what it delivers is backed by clinical evidence and is cost effective. Practitioners have had a good idea that acupuncture works in certain situations, and therefore it has been dabbled in in western medical literature since the 17th Century, but only really has there been any western systemised clinical trials since 1950… so we are a touch behind the Chinese with this one! Sadly western medicine tends to ignore the wealth of evidence from China, to do it’s own. Evidence has been looking into the science behind how acupuncture works, the science behind pain, and how we can modulate pain, and has yet to look into how acupuncture can be used for asthma, gastric motility, mood, addiction, etc. etc. etc. in any great length.

 

What we do know is that acupuncture can have a strong analgesic effect… I’m not going into the science of pain and how acupuncture effects pain… that is was too much for my baby brain to take at the moment ***

 

Ok… back to my recent experience… As I said there are two approaches, I was trained by a western practicing physiotherapist who happened to be Chinese, and after learning the western way, has been to China to learn the TCM method also… He looks at papers from both sides of the globe for his evidence and teaching, and therefore stepped away from the rigid teachings of some western acupuncture societies to pass on his wealth of knowledge to hopefully produce good practitioners that get results, whilst still are able to backup their practice with evidence.

One of the main aspects of his teaching was that acupuncture needs at least 6 sessions (3 weeks getting treatment twice a week), plus there needs to be progression, so start with 6-10 needles (consider if this is unilateral or bilateral – so may need for example 6 needles per hand if treating hand pain) but increase number of or change points of needles as required, aim for 30 minutes treatment time, and make sure you stimulate the needles initially every 5 minutes until Deqi (energy – generally felt like a numbing heavy sensation – this is the sensation that enables people to undergo surgery with only acupuncture as analgesia!!) is achieved.

This is how both the western and TCM have shown that acupuncture gets results….

 

My acupuncture consisted of (despite my pain being widespread) once a week sessions of 30 minutes for 4 weeks, two needles in each wrist (this didn’t vary or change at all despite little help from the first couple of sessions), stimulated once per session, with no Deqi achieved, and a huge amount of discomfort 1) in the positioning of myself – have you ever tried to sit in one position for 30 minutes without moving an inch because you have needles sticking into your very sensitive skin, and 2) in the needle sites them selves as they were in so shallowly that they waved around in the breeze from an open window.

Acupuncture, although not a painless procedure – someone is sticking needles into you – is on the whole a very comfortable treatment. Most of your bodies pain receptors are in your skin, once the needle has passes through these into the tissues below there is very little to be felt. Acupuncture needles are sooooo much thinner than when you get an injection, and therefore are far less painful than any injection…. unless they are left in the superficial layers of the skin!!!

 

So all in all… I’m afraid despite how lovely my clinician was, my acupuncture was a huge failure, however this lady wasn’t used to treating ladies with RA, she’s used to treating pregnant ladies with low back pain and pelvic pain, and all the girls at hydro that I spoke to that were getting acupuncture for their pain were getting great relief, therefore I feel it was probably a lack of experience of treating other areas of the body!!!

I think probably my background knowledge also put me at a disadvantage as I was sitting there thinking… ‘this isn’t enough needles, there are better points around the hand and arm that could be used, the needles aren’t in enough, they haven’t been stimulated enough, I’m not getting that nice warm heavy numbing sensation’.

As they say, ‘if you believe something is going to work it probably will…. if you don’t believe in it it probably wont!’. I do believe in the benefit of acupuncture, wholeheartedly, just not my recent exposure to it!!

 

So, my advice to anyone who is considering acupuncture for RA… I’m sure it has it’s uses, but if your looking for a practitioner do your research!! Either TCM or Western I believe both have value, I think it is more important the level of experience that that practitioner has in treating YOUR condition or problem! Ask them how many people have they treated with these problems, what is their success rate, ideally get some recommendations from people who have been to them before, and check out their registration to professional bodies – anyone can do a couple of weeks course and pop a certificate up on their wall, but if they are registered with a professional body then they will be regulated!!

 

*** Pain is a really fascinating thing, and how the body and brain connect to signal pain or block pain is very interesting, so if you ever decide to look into it, there are thousands of books and websites and papers that go into it in varying amounts of detail!! Just be prepared to get your thinking cap on and give yourself plenty of time!

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:

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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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