I am a runner

I can now call myself a runner…

… so says Laura, the coach on my Couch to 5k podcast. I completed Week 6 of the programme with a 25-minute run. I am now half way through Week 7, which consists of three more 25 minute runs.

I have changed my running route. The route I have been using until this week is along an old railway embankment. It is flat and reasonably straight, through pretty woodland. A lovely place to run, however it is only 3.5 k (just over 2 miles) – so not far enough for the final stages of the programme. I took some time last weekend to scope out a new route. My dog and I spent a very pleasant afternoon wandering over the fields and lanes to map out a 5k circuit. I was very excited to get started!

The new route is across much more open terrain, so a little more exposed to the elements. I’ve only had to contend with blazing sunshine so far, which has made the experience hot and sticky! There is also a significant incline about half way around, which seemed a good deal steeper when running than it had appeared whilst walking. In addition, I have to negotiate several gates and styles – but hey, they give me a breather, right?!

I have managed the circuit twice now. Both times I have run 3 k (2miles) in the 25 minutes. So my baseline is 12 minutes a mile. Slow I fear, but I have to start somewhere and the only way is up from here – literally as I’m running uphill…

Today I will attempt my second run of Week 7. My husband is going to run with me so I won’t be tempted to stop. My mantra is “keep moving” – no matter how slowly.

I’d love to hear from other runners and learn from your experience. The questions I’ve got at the moment are – What is a comfortable pace for you? How far do you run, and how often? How long did it take you to feel comfortable running your favourite distance? However, any thoughts, advice and encouragement you have will be gratefully received. 

Learning to be vegan…

I am learning to be vegan…

Not content with learning to run I have also decided to change my diet. There are many reasons why people choose a vegan diet including ethical, environmental and health considerations. My health is the main driver for me trying a vegan diet, but the ethical and environmental concerns are also driving this change. I know that eating mustard makes me very ill, but there seems to be other things that I eat that upset my body – causing pain and fatigue. I have given up meat, chocolate and wheat at various times in the past, and felt better for it, but I have never stopped eating eggs and dairy before. I have been contemplating a vegan diet for a while but it took my husband to set us on the path to change! His interest means that we can become a vegan household and I’m not having to do it alone.

A friend had recommended Deliciously Ella – a blog and cookbook written by Ella Woodward– a few months ago. Ella has PoTS (postural orthostatic tachycardia syndrome) and has used food and diet to help her control her symptoms. It has been a great place to get inspiration, and recipes.

The meal I have found the most challenging to make vegan is breakfast. I was addicted to Greek yoghurt and homemade granola. Until a fortnight ago I’d eaten almost it every day for the past two years. I thought that porridge may be a good alternative but I don’t enjoy the texture, so I’ve been experimenting with making a yoghurt substitute and this morning’s breakfast worked quite well.

I soaked a third of a cup of porridge oats and 4 brazil nuts in water overnight. This morning I discarded the water, then whizzed the oats and nuts together in a blender along with a tablespoon of coconut cream and a couple of peaches to make a thick smoothie – the consistency of yoghurt. It wasn’t a great colour but with a portion of granola and a handful of blueberries on top it made a tasty breakfast.


I think that I will try a blend of oats, brazil nuts and coconut cream tomorrow, and put the fruit on top. It might look more appetising! I’ll let you know how I get on.

Learning to run…

I am learning to run…

 

I have just started week 6 of a couch to 5 K programme and I’m feeling quite chuffed. I’m also feeling it in my right hip and my knees!

At the end of last week, I ran for 20 minutes without stopping. If you had told me 5 weeks ago that I’d be able to run for 20 minutes without a break I would not have believed you! Today I ran for 18 minutes over three sessions – 5 minutes, 8 minutes and 5 minutes.

My motivation for following this programme? Well, in May/June this year I walked, with my husband, the Wainwright Coast to Coast route – 192 miles from St Bees on the west coast of England to Robin Hoods Bay on the east coast in 12 days. It is a challenging walk across beautiful landscapes; but we enjoyed every second of it, and felt fitter by the end. I wanted to build on the achievement and new levels of fitness but couldn’t justify spending 5 hours walking every day! I have always admired people who run, and even attempted to start running myself – on several occasions, all without success. I believed that I couldn’t run, and finding out that the blood supply to the lower half of my lungs doesn’t come from my heart (it comes from my abdomen!?) just perpetuated the myth that I can’t run. This is despite the fact that I used to play hockey at school – and thoroughly enjoy it.

I subscribed to the NHS Couch to 5K podcasts, put on my trainers and started – walking. Each session starts with a 5-minute walk. Everything is explained, and timed, and you build up very slowly so it is relatively easy to keep going. I am enjoying it, and feel a real sense of achievement and progress. My body does grumble – as I mentioned above, my right hip and knees are complaining tonight. I have taken some anti-inflammatories and hoping that after a good night’s sleep they will settle down. Finger crossed!

Back to the Drawing Board

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I’m just coming out of a major flare-up. It completely floored me, leaving me in bed and unable to function for 3 days. It felt like an elephant was sitting on my hips, a rat was gnawing it’s way out of my head, a hot spring was bubbling in my belly and someone was hitting the bottom of my feet with the back of a cricket bat. My temperature regulation was all to pot so I alternated between being very cold and shivery and overheating and pouring with sweat. No vomiting though! A major breakthrough (I say hopefully) and relief.

I haven’t had a flare since late October last year and had been feeling pretty pleased with myself! Ha – serves me right for being smug. I have been seeing a gastroenterologist recently in an attempt to get to the bottom of why I’ve been suffering from bouts of vomiting (and corresponding headaches) every three to four weeks. (So going almost 10 weeks without a flare has been a great relief!) I’ve lost almost 2 stone, which has been nice – but it has been an extreme way to do it. Long story short, after lots of investigations involving cameras, scans, needles and sample containers it was decided (by the gastroenterologist) that I was suffering from migraines and needed to take migraine and anti-sickness medication, and to see a dietician about going on an exclusion diet in order to find out what the triggers were.

My GP prescribed the medication but could not refer me to a dietician as our CCG doesn’t fund this type of referral. So, with some advice from my GP (“don’t exclude too much at once as it will make it difficult to stick to”) I tried my own version of an exclusion diet. The internet gave me some ideas about foods that might cause my migraines so I decided to exclude cheese, chocolate, alcohol, citrus fruits, eggs and mustard from my diet for three weeks before, slowly, introducing them back, one at a time. It didn’t take me long to feel better, and to be honest after about two weeks I forgot I wasn’t eating cheese and had some! I love cheese.

The bottom line is that mustard makes me feel very ill! One of the reasons I had suspected cheese might be a culprit was because after eating cheese scones (my go to treat for afternoon tea!) or meals with a cheesy sauce I would often be ill. Turns out it’s not the cheese but the mustard added to enhance the cheesy flavour.

Most people have been a tad incredulous when I’ve told them. “Do you eat a lot of mustard?” has been the common enquiry. Well, yes I do – did! I use it in my cooking as a flavour enhancing ingredient. And it is in a huge number of common groceries – mayonnaise, most salad dressings, coleslaw, lots of supermarket deli salads, frozen fish, curry powders and pastes, ham, tartare sauce; to name a few.

Mustard is one of the common allergens that have to be highlighted under the European food labelling directive so it’s relatively easy to spot in the list of ingredients on food packaging – it appears in bold type. And I’ve banished mustard powder from my larder.

So if I’ve cut mustard out of my diet what has caused this latest flare? Well it could be one or a combination of several things.

1.       Overdoing things? It has been a very busy Christmas and New Year so I haven’t been pacing myself with my usual care. Also I have neglected my exercise routine – I’ve not been doing any strengthening/stretching exercise for several weeks and my daily walks have not been daily, and have been significantly shorter than normal.

2.       A reaction to the massage and reflexology session I’d had the day before my flare-up began?

3.       Dehydration? I didn’t drink very much water the day before. And I am always told to drink plenty after a massage.

4.       Something I ate? We ate out the night before the flare started. I was assured by the restaurant that they didn’t use mustard in their cooking but was it a hidden ingredient in something else they use? I visited a friend just before Christmas who had made soup. She hadn’t used mustard, however she had use some tikka masala paste and when we checked the ingredients in the paste we found mustard. So no soup for me. (And it smelt delicious!)  Or is this flare a reaction to another ingredient/spice?

5.       Nothing? It was just time for a flare.

My post-flare plan of action? Go back to the drawing board! I need to pace myself, restart my exercise regime – gently and build back up to pre-Christmas levels – continue to monitor what I eat and how it makes me feel, and stay hydrated. Wish me luck.

Lost in the fog

 Not until we are lost do we begin to find ourselves. 

I’m a tad lost in the fog at the moment! Fibro fog that is.

One of my very best friends has a fabulous saying which sums up how I feel perfectly – “my head’s in a shed”. I have manged to miss three important occasions in recent weeks because I have entered into the wrong date on the calendar on my phone. It makes me look, and feel, very silly!

There is a wonderful resource, which I found in the waiting room while waiting for a physiotherapy appointment at the hospital, called The Pain Toolkit. I found it in booklet form but there is also a great website. It is a very practical guide to the self-management of pain, developed by Pete Moore, who himself suffers from persistent pain. You can read more about Pete and the development of the toolkit here.

There are 12 “tools” in the Pain Toolkit. The first one is being “Accept you have persistent pain…and then begin to move on.” It is, arguably, the most important and, in my experience, the hardest tool to implement!

I have changed the wording to fit my personal circumstances. For me it says – Accept you have JHMS and Fibromyalgia…and move on.

Or – Accept you have persistent pain, fatigue, digestive issues, foggy thinking…and move on.

The crucial word here is Accept. The difficult word here, for me, is Accept. There are lots of graphics and articles on the internet, in fact one popped up on my Facebook timeline just the other day, titled “Things Not to Say to Someone Who Has a Chronic Illness”.

Things like
· Snap out of it!
· It’s all in your head.
· It could be worse, at least you don’t have cancer.
· That’s not a real illness.
· Just think positive.
· Have you tried changing your diet?
· It will get better, just be patient.
· You need to exercise more.
· You take too many medications

As I read the graphic I realised that although I would never dream of saying these things to other people I say them to myself – regularly!

It is so easy to believe on the days when I am feeling well that I don’t have JHMS or Fibro. I can go several days or even weeks living in a bubble of denial and delusion which means when a flare occurs it’s crushing.

A metaphor I like to use to describe my situation is this. Imagine a deep dark well, the walls of which are dotted with footholds, to allow access, and scattered around the well, at differing depths, are some ledges. Two years ago I was at the bottom of the well, not coping with the pain and stress. In fact I was digging and making the well deeper! Over the past two years, with help from healthcare professionals and my family, I have managed to stop digging and climb to the top of the well. I have even been able to live for significant periods of time out in the sunlight. During these times I begin to forget about the existence of the well until one day I trip over the edge and fall back in. If I am lucky I don’t fall too far before I land on a ledge where I can sit for a while to get my bearings and start the process of climbing back out. Maybe, just maybe if I keep in mind that the well is always there I might avoid falling down it?

Time to Reflect…

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“Look after the senses and the sounds will look after themselves” from Alice’s Adventures in Wonderland by Lewis Carroll.

I’m struggling a bit at the moment if I’m really honest.
My pain and fatigue levels have gradually increased as the days have got shorter and the weather has become colder and wetter. I am finding it difficult to get out of bed each morning and to get going each day so I don’t feel that I’m making the most of my day.

It is time to take stock. When I’m feeling well I find it very easy to believe that the fibro has disappeared and the HMS doesn’t affect me so I don’t need to employ the self-care strategies that have helped me to feel so well.

So I am revisiting the notes I made at my Clinical Psychologist appointments, starting with the first appointment.

My first visit to the psychologist, Emma, was a revelation. I had waited 9 months to see her, but it was well worth the wait. She listened with compassion and concern. She had heard similar stories before, many times, and I didn’t have to defend myself, I just explained.

Long story short we discussed what I did, on a daily basis, to deal with my pain and symptoms. We discussed how I felt about the pain and what I found worked to help relieve symptoms. No judgement.

I came out of the appointment feeling happier than I had felt in months (if not years) and with some homework to complete before my next appointment.

My homework was to accept that I suffer from HMS and fibromyalgia so treat myself with compassion (!) and to pace my activities (?!!). Emma explained that I had to imagine that my energy was stored in tank, a bit like a petrol tank of a car. Resting and being kind to myself add energy to the tank, being active would (obviously!) use energy. I was to try and keep my fuel tank over half full.

So rest was to be my new best friend! Having spent most of my life ignoring what my energy levels were telling me and using rest as a reward for finishing a task, or list of tasks, so keeping my tank near the empty mark this was going to take quite a mind shift to achieve.

I plotted my energy levels throughout each day for a week on a grid, recording my level as a score out of ten with ten being full of energy and 1 being no energy. At the end of the week I could see a pattern emerge. That pattern is still the same today. Low energy in the morning, dipping during the middle of the day and rising to the highest point towards the end of the afternoon. The pattern hasn’t changed, just at the moment the scores don’t rise much above 5! Low energy understandably means high fatigue levels, and at the moment also coincides with higher pain levels.

So my challenge this week is to accept that my pain and fatigue levels are high and to treat myself with compassion. Also to pace my activities. It is easy to try and cram too many tasks into a day and not to leave rest times in between. I know the times of day that my energy levels are likely to rise so, in theory, I can plan appropriate tasks for those times. In theory!!

Monday Morning Ritual

Medicine is a science of uncertainty and an art of probability – William Osler

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I have just sorted my medication for the week. It’s a job I do every Monday, putting the tablets I will take each day into my pill organiser. Using this system has two benefits. The first is that I can see when I am going to run out of a particular tablet and order my repeat prescription in good time. The second is that I can be sure that I have taken my tablets each day, an important consideration when brain fog descends! I have on several occasions got part way through the day and not remembered whether I’ve taken my tablets that morning or not. If I have taken them, but believe I haven’t, I could take more unnecessarily. Doing so once or twice probably wouldn’t be a problem physiologically, however it is wasteful, adds to my expense and can be a source of anxiety.

It also means that when I travel I don’t have to carry lots of bottles and packets, just one small(ish) organised box.

I take some medication prescribed by my doctor’s and I take some supplements that have been recommended by my doctors and/or fellow suffers.

This is what I take:

Prescribed by my GP and Rheumatologist – Iron, Vitamin D, Amitriptyline.

Supplements recommended by my doctors and/or fellow sufferers and my own research – magnesium, aspirin, vitamin B12, psyllium husk capsules.

I take paracetamol and ibuprofen as needed to combat pain from inflammation and injury.

I have found that this regime helps me to maintain my energy levels and to cope with the pain and fatigue. I have considered each medicine/supplement in more detail below.

NOTE: I take these medicines/supplements after discussion with my doctor. This regime is personalised to me and helps with my symptoms. Other people may have different symptoms and different reaction to these medicines.

Iron.
I’ve been prescribed iron on and off for most of my life. I took it for the first time as a teenager, then with each pregnancy and several other times in between. I went to my GP (family doctor) about 6 years ago as my hair was falling out, I felt tired and unwell (again). Blood was taken and tested. My thyroxine levels were fine (hair loss and tiredness are symptoms of impaired thyroid function) but my haemoglobin levels were on the low side of normal and my ferritin levels were very low. Ferritin is a protein that stores iron. Low levels are indicative of iron deficiency. I started on a course of iron tablets, and after several months my levels rose so I stopped taking them. A couple of years later I found myself in a similar predicament, ferritin levels were found to be very low again so iron tablets were prescribed. I’d never liked taking iron tablets. They can upset your stomach, make you constipated and turn your faeces black. Not pleasant!! So I have to admit to not taking them as regularly as I should but slowly my ferritin levels rose back to normal levels and with great relief I stopped taking the tablets. A little over two years ago, when my fatigue and pain levels reached an all-time low (or high!?) I went back to my doctor. My blood was checked and, yes, you’ve guessed it, my ferritin levels were low. Very, very low. I started back on the tablets.
My GP prescribes ferrous fumerate, which are kinder on the stomach than other forms. I now take them regularly and am now used to them! When I started taking them I took 1 325mg tablet 3 times a day with meals. My ferritin levels are now a healthy level, however going on our past experience my doctor and I agree that I should continue to take them to maintain my levels. I now take two a day, morning and night.

Vitamin D

My rheumatologist also took copious amounts of blood to test and found that I was also very deficient in vitamin D. He prescribed vitamin D3 capsules (800iu) which I take twice a day.

My GP tests my blood regularly to monitor my ferritin, Vitamin D levels and calcium levels. (Vitamin D supplements can increase the amount of calcium in your blood.)

Amitriptyline

My GP prescribed this for me when I was diagnosed with fibromyalgia by my rheumatologist. Amitriptyline is often prescribed for neuropathic pain. It was originally used as an antidepressant with doses of 150mg and above, however it’s not a very well tolerated drug at high doses so isn’t often prescribed as an anti-depressant now. Lower doses of amitriptyline however have been found to be effective in treating neuropathic pain. I started taking 10mg of amitriptyline and slowly built up to 30mg over a few weeks. The tablets haven’t really had any effect on my pain levels, but what they have done is help significantly with my “irritable” bowel and gut issues and my migraines. Amitriptyline is used to help in a wide variety of chronic illnesses including migraines, irritable bowel disease, overactive bladder, poor sleep and pelvic pain. I did wean myself off them at one point (I did it very slowly over about three months) but found that my gut and migraine symptoms returned after a week or so. I now take 10mg in the evening which is enough to keep my digestive tract working and reduce my migraine attacks significantly, without making me too sleepy.

Magnesium.

I take a magnesium tablet twice a day. This hasn’t been prescribed by my doctor but I have discussed it with him. Shortly after I was diagnosed with fibromyalgia I went to a talk given by Dr Kevin White (which I document here). I sat next to a very nice Doctor who mentioned that magnesium had a very beneficial effect on muscle cramps and pain. During my subsequent research I came across a publication health for medical professionals in the US which recommended prescribing 300mg magnesium twice a day to prevent migraines. I thought it was worth a try. I am convinced they help.

Aspirin.

About three years ago my GP suggested that I take 75mg aspirin a day as a way of preventing headaches and migraines. I’m not sure how much they helped with those issues but I’m still taking them. There has been a good deal of press coverage about the benefits of taking aspirin that I may as well carry on.

Vitamin B complex with B12.

Following a discussion, on one of the many hypermobility syndrome support groups on Facebook, about fatigue I decided to try taking a vitamin B complex supplement morning and night. I think they are helping, I’ve been taking them for about four months now and my energy levels have been reasonably good.

Psyllium husk.

I have been using psyllium husk for years to help with irritable bowel symptoms. My GP prescribed fibogel (ispaghula husk) sachets but I struggled to drink them and they caused stomach cramps. My research about IBS suggested that psyllium husk might be a better option. I take a psyllium husk tablet (from Holland and Barrett) with breakfast and supper. They are helpful. I notice a difference if I don’t take them for a few days.

I’ve looked at other supplements such as co-enzyme Q10, zinc and garlic. Vitamin C often comes up on forum discussions. However I don’t want to overload my body (or my purse) with supplements and, at the moment at least, I appear to have found a regime that works for me.

I would be very interested to hear about your medicine/supplement regime. What works for you and what doesn’t?