"Here at the end of all things"

As I'm sure you've noticed, TRB has been very quiet for some time.

I thought it was probably about time I made the silence official, but if you're looking for anything particularly profound I'm afraid here isn't the place for it.

The heart of the matter is that I no longer have the need to write here.

When I first started the blog, underneath a desire to help other patients with my writing (two parts whimsy, one part ranting) was my own need for catharsis. Nearing the end of an eighteen month struggle for a diagnosis (by that point, any old one would have done, correct or not!) I was frightened and angry to the point of savagery. Nobody knew what was wrong, suggestions had been made it was entirely somatic and a product of my imagination, and in place of the support I'd expected from friends I was receiving from some only spite and suggestions I was merely hoping for attention.

I was in short absolutely furious. There really is nothing like pure, white-hot fury to get your creative juices going and I channelled them here, into words.

(A design on Zazzle. It made me chuckle.)

 

Part of the silence is that I'm just not angry any more.

Well, that's a bit of a lie. I am angry - I commute by train every day to and from work, there isn't a chance in the world I'm not angry, at least for the amount of time it takes me to escape the station at rush hour. However, I'm not angry about my situation. That particular fire has gone out, and I'm able to let ignorance wash over me and ignore it, something I struggled to do before.

The second and possibly more important part is that, touch wood, I've now been mostly symptom free for nearly six months.

I'd feel entirely hypocritical and just plain wrong if I carried on writing as a patient when I'm not actually feeling much of the effects at present. It feels like deceit, whatever the best of intentions behind it.

I am not foolish enough to think the problem has entirely disappeared, but it is certainly lying very low. It seems to have been that since my cancer scare and subsequent operation in December Petunia has gone into a lengthy hibernation. I will not be upset if she decides she likes sleeping better than she does arguing with me.

I have been very fortunate in that recent changes in my circumstances have resulted in far less stress than was previously a part of my life. I have finally landed firmly on my feet in a job I love, and have the opportunity of really furthering my career in that I am being sponsored through my legal exams to become qualified. This also means a lot of my spare time will be taken up with studying, but I finally feel in a place with my health where I can take that endeavour on.

My other half and I are lucky enough to live out in the countryside where it's very peaceful. I no longer walk home from work and wonder how many drunks I'm going to have to dodge on the main road before reaching the safety of my front door. The most lively think I am likely to encounter on my new route home is the pub Labrador doing his constitutional rounds, who occasionally likes to escort me home.

Never fear, I haven't become one of those people. I don't think that stress is the sole cause of Fibromyalgia and that de-stressing will cure you. Perhaps I am just mild enough on the spectrum that it makes enough of a difference to let me function mostly normally again.

So, as I said my own personal need to write here has passed.

I know the blog has been helpful to readers, because plenty of you have been kind enough to contact me by one means or another and tell me. To have started up expecting maybe ten readers a month, to be here twenty-eight months later with one hundred and forty four posts and fifty five thousands views, two rounds of nominations in the WEGO Health Awards, and having being made part of the Chronic Illness Cat team is the sort of positive reception I couldn't have dreamed up if I'd tried. As such I'm not deleting the blog, merely ceasing to write any new content. It can stay here for those who want to read it, and hopefully it might continue to be helpful.

So, thank you to everyone who has been reading. Thank you for your comments, for making me laugh, for correcting my typing (sometimes you wouldn't believe I'm a secretary!), for sharing your stories with me as I have done my own. Thank you to everyone who nominated and endorsed me for WEGO Health, and especially thank you to everyone who got in touch in December before we got the good news. There were genuinely more than a few tears for all the kind messages.

I have enjoyed our conversation very much, and I hope you have too.

(Image from sfgirlbybay.com)

Wishing you all, as ever, many spoons
xxx

"It's just a fashionable diet"

One of the most common complaints across the board of chronic illnesses is problems with food and digestion. Whether it is specific intolerances or more general bowel issues (diagnosed or not) it is a factor many patients have in common.

Another thing many patients have in common is facing the attitude from others of “It’s just a fad diet”, thereby implying that you are being awkward and difficult for ultimately silly reasons.  This is particularly in the case of problems categorised as intolerances. We all know allergies are deadly and I like to think that nobody would argue with another person who stated they couldn’t eat something because they could quite literally expire if they did so. I’d really like to think that everyone is decent enough to not do that.

This understandably casts "mere" intolerances in a poor light. They’re not deadly and therefore I think some people see this as an excuse to ignore them or at the very least not take them seriously. When taken in direct comparison with an allergy I can see why this is so.

However, let’s talk a little bit about food intolerances. I will warn you now this will not be particularly pretty.

First off it’s worth pointing out that you can have an intolerance to just about anything you ingest, and if it’s a minor ingredient hidden in a lot of foods then you’re going to have a tougher time weeding it out. Two of the most prevalent intolerances you would be likely to come across are to gluten and lactose, a sugar found in dairy products. Usually those are the first two candidates a doctor will tell you to exclude to try and narrow down the source of the problem.  

Symptoms of a food intolerance can include abdominal pain, acid reflux, bloating, constipation and/or diarrhoea, fatigue, headaches, nausea and skin problems amongst others and when acting in co-morbidity with another condition the list of potential problems grows exponentially.  

(Some more possible symptoms. Image from thebroadstreetpractice.com)

This year I’ve discovered that I am intolerant to gluten, and I found this by going gluten free for the better part of four months. Many of my digestive symptoms calmed down and some ceased to exist entirely during this gluten free period.  To give this some context I hadn’t had what you would consider a normal and healthy bowel movement in probably two years. Apologies for this being a little icky, but I think that sometimes in tip-toeing about and prettifying the point you lose the importance therein. Given this is a topic that is already not taken particularly seriously, avoiding the unpleasantness simply won’t do.

So, through exclusion I found that my problems were routed in intolerance to a certain foodstuff, and I set off into the brave new world sans bread.  The difference has been wonderful for me, and I would recommend if you’re going to try exclusion dieting that you need to eliminate the chosen food or drink  for a good few months – it took two months for me to start seeing any benefits and a further month for “normal” to happen.

Now it’s time for me to hold my hands up and admit my guilt. I don’t always behave with this. I don’t always feel up to the potential battle of wills which follows asserting this issue, so sometimes I just keep quiet and eat things that I probably shouldn’t. Other times it’s for a reason far simpler – every now and again a girl needs a slice of toast in her life, and as I don’t have an allergy I’m lucky enough to be able to indulge on occasion.

This obviously doesn’t help on the being taken seriously point, but the thing to remember is that this is my body. I know what’s going with it and I know if my symptoms have been low key enough to allow a bit of gluten-containing food or whether in fact they’ve been disagreeable and so it should be avoided. When last I looked, nobody else held the responsibility of policing my digestive system.

Rather like most of the symptoms of ongoing illnesses it’s something that can be fine one day and then troublesome the next. I understand that cooking around dietary restrictions of any kind makes things more difficult, and I'm always incredibly grateful when people do make this effort and particularly when cooking for many. That being said however I do very much resent the idea of “just being awkward”.  To prove my point, I have but one question:

Why would I deliberately make things awkward for myself?

Consider this: I like bread, pasta and plenty of other gluten containing foods. Gluten free versions of those products are available but they are invariably far more expensive than their ordinary counterparts, and often quite difficult to come by.

(I wasn't hungry before I started putting this post together.... Image from lavenderandlovage.com)

In illustrating this, I worked out recently that if I wanted to cook a completely gluten free meal of lasagne and an accompanying garlic bread, then assuming I went to my usual supermarket for the other ingredients I would need to visit two different additional supermarkets to find the gluten free pasta sheets (Tesco or Waitrose) and the garlic bread (only Asda so far). That’s a lot of messing about for just one meal, but sometimes life calls for lasagne and garlic bread in a way that even the stoutest of hearts cannot ignore.

My approach is that when I know an event is coming up where the insidious presence of gluten is likely to make itself felt then I’ll avoid it completely for a couple of weeks before and probably after to make sure things can get back on track as quickly as possible. I would say that I am currently working on about 90% gluten free the vast majority of the time and this keeps things ticking over quite nicely, and means most of the time my symptoms are mild enough that I can allow myself the occasional treat of a gluten product (who am I kidding with “product”? It’s cake.)

I believe we’re back at the same point I often make in that it’s not for anyone else to decide what is best for you, your body and your condition(s). If it’s something that affects someone’s quality of life then it should be taken seriously, not ignored on the basis of it not being something else. That’s the same logic that leads people to tell chronic illness patients “At least it’s not cancer!”

Next time you are faced with cooking around a dietary restriction (and I’m including the choices of being vegetarian and vegan in this too, as they seem to carry the “awkward” tag just as often) perhaps instead of bemoaning how this affects you, you should take a moment to consider that it isn’t actually about you at all.

To end on a happy note, for all my fellow cake fiends who are reading this and might also need to avoid gluten, I simply must recommend this dark chocolate fudge brownie recipe. I needed to double the oven time from what the recipe suggests but those brownies are simply god-like.

I kid you not, there will be angels composing odes about them as we speak. 

Has anybody else discovered food intolerances? Has this made your symptoms any better?

Wishing you all many spoons xxx

Who will rid me of this turbulent.... something?

If only it were as easy as having Petunia assassinated.

Mind you, if it had been that easy this would have been a rather short-lived blog. Swings and roundabouts as always.

By way of summary, I’ve decided to give in and go back to the doctors. I’ve been resisting this for some time as I really don’t take kindly to the thought of going back down the gastroenterology route once more. I’ve been telling myself I can put up with all the various shenanigans my digestive system likes to engage in, if only I didn’t have to go back and fight my way through all the lowest common denominator rubbish the GP would drag me through before actually listening to me again.

Truth be told though, I can’t. Aside from all the usual things, spending nigh on a month so bloated that my clothes don’t fit properly  and being in pain as a result of the most normal of bodily functions is just that one step too far. Actually, it’s several steps too far but I’m exceedingly stubborn. The fact remains I should probably have done this some time ago.

Nothing in my diet has changed in that time so there’s nothing I can point to in terms of why things have suddenly gotten so much worse again. Especially when you consider that up to the last couple of months I’d been without more than moderate trouble in this area for the best part of a year. I really don’t have even the faintest idea what has happened.

So, never one to sit around and wait for the solution to walk through my door (hurry up, would you?) I’m going back to keeping a diary so hopefully I can bypass some of those initial hurdles with the doctor and give them something to work from.

(Image from mindbodygreen.com)

I’m also going gluten free for at least a month to see what effect if any that has. I don’t expect gluten is the true source of the problem, but if cutting out bread and pasta and the like helps with the bloating (which I suspect it may do) then I think it’s worth a try. Once I’ve had my trial of that, I’ll try going dairy free.

When I referred to lowest common denominator with the GP earlier, this is actually where some of that feeling stems from. When I first started to develop bowel symptoms the first thing I was told was “Try a week without gluten and dairy and come back”.

Er, no. If you’re going to go free of something to test for an intolerance then do it properly. When you consider the fact an ex-colleague of mine (who was a diagnosed celiac) repeated to me that it takes six years for all traces of gluten to leave the system, what exactly do the doctors expect to happen in a week?

I strongly suspect with answers like those they actually just want to delay having to deal with you. Current thinking for those wishing to go down the Paleo diet route is that you need to remove the offending food groups for thirty days to see a difference. So, thirty days of gluten free here I come.

In light of this decision I went gluten free shopping last night after a quick horror-filled dash around our kitchen confirmed that almost everything in the known world has gluten in it. Aside from the obvious, the yoghurts we currently had in (Activia) contain wheat flour which came as a bit of a surprise. I also wasn’t too happy to find gravy was out too. However, I have now discovered Bisto Best (the glass jar variety) are suitable for celiacs, so that’s something of a blessing.

After copious amounts of eye-watering at some of the prices I encountered, I came away with some yoghurts which use tapioca instead of wheat flour (Shape in this case, but there’s a fair few about), gluten free pasta and some gluten free ginger cake slices so I have a go-to if I want a sugar fix, which I suspect I might. I also found some gluten-free self raising flour and a bag of ground almonds – thankfully there’s an easy equivalent gluten-free recipe for the apple and cinnamon cake I make, so the other half’s birthday cake later in the month is saved.

Other than that, basically I’m swapping sandwiches for salads at lunch time and having fruit and a yoghurt for breakfast instead of cereal. Main meals are planned to be mostly meat and veg so if nothing else I’ll be clean eating like a pro for the thirty day period. Here’s to hoping I see some results.

I’ve mentioned food intolerance tests before, but the main reason I have yet to have them done is the expense. A month has not occurred yet where I have £200+ spare to play with. This week however I discovered a company who live here who offer hair testing instead of blood testing, which if I understand the science behind it correctly is better for showing generalised patterns, whereas blood tests are much preferred for emergency or minute-to-minute analysis. 

I’m familiar with hair testing through work (it’s the preferred method to test for drug and alcohol levels) so know a bit more about it, but another large appeal is that it’s much cheaper. Over £120 cheaper than the previous best quote I’d seen in terms of blood testing.

I might just be on to something there!

I’ve also purchased a copy of Jillian Michaels’ 30 Day Shred DVD, since I’ve enjoyed the DVD I have from her series so far. I’ve heard good things in terms of results for 30 Day Shred and some of the appeal lies in the fact that there are three levels of intensity to the workout, so if the limits of the Fibro dictate that I have to stay at level one then that’s fine, but I’ve also got the opportunity to try something a little harder if I feel up to it.

(Could start being highly relevant after this 30 days.... Original X all the Y meme from Hyperbole and a Half)

Whilst I’m not under any illusion I have much in the way of excess weight to lose, it would be nice to feel that whilst I work against  all the extreme bloating and water retention, underneath it I’m getting into good shape. It would be pleasant to think that at some point in the future I’ll be rid of those side effects and maybe get the courage up to show off a little.

As it’s me than the latter is extremely doubtful but stranger things have happened at sea.

Now I’m thinking about it though, probably not very many *wink*.

Have you had any attempts at exclusion diets or experiences of food intolerance? I’d love to hear them and hope to share mine as I go forwards.

Wishing you many spoons