The ‘ache’ in ‘The Ache to Bake’ – the joy of baking and the ache of living with chronic pain

Hi and welcome. I’m Victoria, I live in Wymondham, Norfolk with my husband Peter, our baby boy and our very naughty Beagle, Hugo.

I’ve created this cake blog for a slightly selfish reason, which is to help me overcome reoccurring chronic pain (the ‘ache’ in The Ache to Bake), by allowing me to concentrate on something I love, CAKE!

I love to look at cake, take pictures of it, bake it, talk about it, eat it (definitely the bit I love the most) and share it. When I was recently told by my physiotherapist to spend time doing something I enjoy, I decided to take the plunge and finally get round to creating this site all about cake, desserts and all things sweet.

I wanted to launch this website six years ago but pain got in my way, you’ll understand why if you read on.

Now I’m not claiming to be the best, or even a great baker. I am surrounded by far superior bakers in my network of friends and family. I think I’m just a bit obsessed by cake and the feelings and comfort it gives me.

I love nothing more than finding new recipes which taste great and are easy to bake. I spend a lot of time sharing recipes with people I know, which is another good reason for creating this site, as it will enable me to do that more easily. I’m hoping that over time, I can encourage some of my friends and family to share some of their favourite recipes too.

Baking was for a long time, the only part of my identity I managed to hold on to whilst living with reoccurring, persistent, unexplained pain (also known as chronic pain). Baking gave me comfort, an escape and something I could still manage to do (most of the time). So I thought I would combine my love of baking and my experience of chronic pain to try to make a difference.

If I can inspire one or two people to bake a recipe or I am able to help someone else who is also living with the torment of chronic pain, then I have made a difference. Probably a very small difference but I will settle for that.

If nothing else, this website is for my own therapy and I’m just spending a lot of time talking to myself 🙂

My promise to you…

Not everything on this site will always relate back to chronic or persistent pain, after all I realise it is very boring to most people. Most of it will be about cake and desserts as above all, I just want you to enjoy the recipes but I will talk about chronic pain, my experience of it and my recovery.

Most of the recipes I share will be incredibly quick and simple. One reason for this is, I believe you don’t need complex or long winded recipes to create cake or desserts which both taste amazing and are aesthetically pleasing.

The second is that due to the pain I have experienced over the years, my capacity and energy to bake fussy recipes hasn’t existed. Therefore I normally navigate towards quicker and easier recipes, unless it’s a bake for a special occasion.

Amongst baking chat, my blogs will talk about my first experience of chronic pain and how I overcame it, to claim the title of being a ‘chronic pain survivor’. After having a year and a half of being pain free and being fully active, I am now battling to recover from a second episode of chronic pain, which started for a different reason to my first episode. That reason being, the birth of my first child.

How the ‘ache’ came about – my chronic pain story

My chronic pain journey is quite long winded and is still ongoing (with my second episode), so there is no way I can cover everything that has happened, phew what a relief I hear you cry!

And quite honestly I can’t remember every single detail. It’s spanned such a long period of time and I’ve undergone such a painstaking number of different consultations, assessments and treatments along the way, it’s been impossible to keep track of every single detail.

If you are new to chronic or persistent pain, (lucky you!) a very brief explainer of what chronic pain is; pain which occurs after the injury or illness which caused it, has gone away. Chronic pain can also occur when there is no past injury or damage to the body. The pain is ongoing and is caused by the brain misinterpreting ‘alarm’ signals from the central nervous system, which triggers the brain to send out pain signals.

These are some of key things I have learnt about chronic pain during my journey…

  • Unexplained, persistent or chronic pain (ongoing pain without an injury or reason for the pain) is complicated. If you don’t see the right professional or get the correct advice about it, you can go for years without ever finding the answer to your pain.
  • The brain is incredibly clever but also incredibly frustrating and can be very debilitating if it’s not functioning properly.
  • Most people including friends and family don’t understand it and to be honest I can’t say I blame them. It took me a while to fully comprehend it (and I still have days when I have to remind myself why I am hurting) and I am the one living with it.
  • If you don’t have the right support, it can consume, rule and ruin your life. Even with a great support network around me I reached some very deep lows and experienced some very dark thoughts. It can seriously affect your mental health.
  • I had to go through a ‘process‘ to accept their was nothing physically wrong with me, to get my head around the principle that my brain was firing pain signals under false pretenses. Unfortunately the ‘process’ was all the tests, consultations, treatments and drugs which I elaborate on below. It was a hugely lengthy process but most sufferers of chronic pain have to go through it to come out the other side.
  • It is possible to get through chronic pain and get back to a normal-ish way of life. If someone had told me in 2017 that I would get back to running, riding and living life without pain, day-in and day-out, I would have told them they were insane and it will never happen, but it did!

I will cover how my first episode of chronic pain came about below. Over time, throughout other blogs, I will talk about my second episode and general experiences and thoughts and feelings of living with chronic pain.

I must state I am not trained or qualified whatsoever in the field of chronic pain, physiotherapy or anything medical come to that. I have simply lived with it for a long time and I am sharing my experience of being a sufferer and survivor so please seek help from a professional if you need it.

The very beginning of my pain story…

October 2012 – I was driving home on a sunny morning from Fersfield to Norwich after a nice morning riding my horse. I was heading down the A11 and went straight over at a roundabout when someone who was in the wrong lane drove into the side of me.

It wasn’t a big crash, no one was going fast and no one was injured, I had a bit of neck ache, a headache and was shaken however I was able to drive home after speaking to the Police.

I remember being most worried about having to miss my run that I had planned for that afternoon and the fact that I had to resign myself to the sofa. Lazing on the sofa was something that I didn’t, and still don’t find easy to do.

I have always been very active, I want to be on-the-go constantly. I was brought up with horses to look after and my parents and sister never rested so putting my feet up in front of the television during the day, just wasn’t something I have ever done.

The next day after the accident, the other driver admitted it was their fault and everything seemed straight forward. My neck was sore but I went to work the next day and tried to carry on as normal. Later that week I attempted a gentle workout at the gym. To my annoyance my neck was still slightly painful and tight.

Over the next few weeks I visited a sports physiotherapist and a chiropractor, yet the pain in my neck and shoulders was still not subsiding. The level of pain wasn’t that bad however it was certainly preventing me from being able to do a proper work out. After spending a day at work, where I would be staring at a screen all day it was particularly sore and achy so I decided to go to the doctors.

The doctor said I had experienced cervical and thoraco lumbar spinal whiplash which I had already guessed. He instructed me to take it easy for a while, and gave the expectation that I should recover within three months. ‘Taking it easy’ wasn’t really in my vocabulary, it didn’t sit well with me but I did as I was told and stopped the gym for a while.

2013 in brief

Three months had gone by and I was still experiencing neck and shoulder pain. I pursued appointments with doctors, physios and chiropractors, none of whom could offer much of an explanation for my continued discomfort. I had tried gentle exercise but every time I did it aggravated things further. At this point, I was just thinking one day soon it will get better.

The doctor suggested trying Pregabalin to try to reduce the nerve pain and settle things down. I was hesitant to take medication yet I was also fed up of being in pain and not being able to pursue my normal hobbies and way of life. I hoped the medication would be the answer to getting back to normal. What I didn’t realise at the time is that this would be one of those moments in my life where I wish I could go back and erase. This was the start to a very slippery slope of spending six years living off a ridiculous amount of pills.

The Pregabalin made me feel very odd, very light headed and spaced out so the doctor changed my medication to Gabapentin. The starting dose offered me little relief so the doctor advised to increase it. Over time, this resulted in me taking six, 300mg Gabapentin tablets a day. The increased levels worked to some extent however I had also started to experience pins and needles in my feet and hands, which would come and go and vary in intensity. After a while the pins and needles were a daily occurrence, they were interfering with my sleep at night and made it difficult for me to sit still for too long.

2014, 2015, 2016 more tests, drugs, therapies and still no answer to my pain

In June 2014 I got married to my fiancee, Peter/Pete after being together for three years. As you can see, cake was still heavily on my mind on my wedding day.

At this point I was still unable to go to the gym due to the discomfort in my neck so I was worried about fitting into my wedding dress, hence the celebratory doughnut when the day finally arrived and I had squeezed into the dress! I could still dance and move fairly freely without fear of hurting which allowed me to enjoy our wedding.

The pins and needles in my hands and feet were slowly getting worse and shortly after the wedding I was sent to have nerve conduction studies. This was not a pleasant experience, I had my reflexes checked an uncomfortable amount of times and I had wires stuck to my fingers and toes, yet none of the tests showed anything unusual.

Over the coming months, the pain in my neck worsened. At the end of 2014 I was referred to the NHS Pain Clinic in Norwich. (the experience of which deserves a blog to itself, which I will try to write at a later date) After my initial visit, it took months to get any more appointments and meanwhile my pain was getting worse. The difficulty to get an appointment made the pain clinic pointless so I continued exploring private treatment options.

If I included every detail about every medical consultation or intervention I had over the next two years (2015 and 2016) I would never get this blog live, plus I would bore you silly, so I will summarise what happened…

Despite trying to take periods of rest, trying gentle workouts or a different exercise, the neck pain persisted and was getting worse. I was also getting bad pains in my shoulders and back. The pain slowly increased in frequency and intensity over the years until I had pain every single day.

I would have headaches most days, which would either be an intense ache or stabbing pains in my head and would come and go in waves or last all day. My neck muscles also felt in spasm most of the time, they constantly felt tight. It felt as though my neck wasn’t long enough for my body, weird I know. The pain had begun to fill more and more of my waking hours and needless to say was negatively affecting my mood and mental health.

I had given up riding my horses, running, spinning, the gym and drastically decreased the long dog walks my husband and I used to enjoy every week. My ability to do even low level activity like simple cleaning tasks or picking up shopping bags made my pain flare up.

I had basically given up most of the household chores, like hovering and cleaning. “Amazing” I hear you say. You would be surprised how demoralising it is not being able to clean your own house when you want to, and having to ask your husband to do it all the time.

Living life with constant pain is just exhausting. I had such a small window of time to do things before I became physically exhausted. Every part of my body would ache, I always tried to carry on but it would get to the point that I couldn’t stand up or move for any longer without resting due to the pain.

Luckily for me, Pete was always really understanding and supportive. He had to take on the lions share of the household chores and cooked the majority of our meals. It’s a dam good job that I married someone fairly domesticated, otherwise I would have really struggled. He’s definitely a keeper!

I would have to lay down several times a day just to let the pain ease and allow me to recoup the energy to carry on. It meant I started to avoid tasks as I knew how it was going to make me feel, I therefore ended up doing less and less and I was losing more and more of my identity.

The pins and needles in my legs, feet and hands had become more intense to the extent that I would barely ever get a full nights sleep without them waking me. I had to get out of bed several times a night and walk around the room to regain any feeling in them.

I was taking sleeping tablets prescribed by the doctor every night for weeks at at time in order to get any sleep. It would get to the point where I had to force myself to go a few nights without them, to reassure myself and the doctor that I wasn’t getting addicted to them. I would often get up in the middle of the night and sit downstairs. I was so uncomfortable that sleep wasn’t an option.

When the pain was really bad I even hated going out to see friends. Being sat in a pub full of pain wasn’t pleasurable. If I had to turn my neck constantly to speak to someone sitting next to me in a pub, I would come home with the worst head and neck ache. Not an enjoyable way to end a night out, and I wasn’t even drinking due to the amount of medication I was on. I had become such a bore!!

When nights out came about I would often avoid them if I was already feeling rough, I didn’t want to talk to anyone and I felt like I had nothing to say. I was consumed by the pain I was in. I was unable to partake in any of my previous interests and hobbies which made me feel totally worthless. I felt like I had nothing to contribute to the conversations with friends who were getting on with their happy, action packed lives, doing the sport and activities I used to be able to do.

The only hobby I was still able to continue was baking. Most of the time I had to do it sitting down as it was tiring. I’d often have to take a break half way through or ask Pete to help me. Pete would often walk into the kitchen and just take one look at me and say “Do you want me to help?” It became a running joke that I’d always give him the cake tins to line and grease as that’s a pet hate of mine.

Baking was my time for some enjoyment, my release and the little part of me I could hang on to. I think it’s what kept me sane, well sane-ish.

Life stressors – many of our friends got married at a similar time to us and so it followed that most of them also started to have families. Pete and I had planned and always hoped to have a family. However as time went by and my pain was getting worse, it was looking less and less likely that starting a family would ever be an option for us.

The amount of tablets I was taking on a daily basis prevented us from even considering trying for a baby due to the risks of them negatively affecting a baby’s health. I was also told by several doctors that it was very likely that we wouldn’t be able to conceive due to the level of stress my body was under from the pain. On top of this, they had concerns of how my body would cope even if I did mange to get pregnant.

I just craved and longed to be normal and pain free so I could get on and live my life how I wanted to, and be me!

Just to throw a bit more shit into the mix Pete was made redundant in 2016 so the pressure for me to still be able to work was even higher. I never took any time off work for the pain, even when things were really bad.

I had reasonably senior, high pressured jobs in Marketing throughout this time so it wasn’t easy yet somehow my body knew that I had to keep going and I was 100% determined not to let it take my job away from me. I loved working and we couldn’t survive without my income.

Over this time I had undergone numerous appointments and treatments, too many to detail so in summary…

Medical assessments – I had undergone numerous consultations with specialist consultants. I had nerve conduction tests, multiple MRI scans of my brain, spine and pelvis, and x-rays. None of which showed any physical damage in my body.

Treatments and therapies – this is where it gets crazy. I had spent thousands upon thousands of pounds on numerous appointments with the below practitioners, due to being so desperate for something to work or to find the answer as to why I was in so much pain.

  • Three different conventional chiropractors
  • A sports therapist
  • Two physiotherapists
  • Cranial Osteopathy
  • Kinesiology
  • Mctimoney chiropractor
  • NHS Pain Clinic
  • Accupuncture
  • Nutritionist – where I tried cutting gluten, dairy and caffeine from my diet

I spent years trying all of these treatments, some would give me light relief from the the pain but they never stopped it. I pursed each one longer than I should have, just in case it started to work.

2017 the lowest year of them all (I think)

By the time I reached 2017 my medication had been heavily increased and I was taking over twenty tablets a day. Some how, god knows how, I was still working whilst taking all of these drugs and battling against being in pain every day.

Some of the tried and tested medication included Gabapentin, Naproxen, Methocarbomal, Diazepam, Co-dydromol, Tapentadol, Dihydrocodeine, Amitriptyline, Zimovane. There were a few more thrown in for good measure at different points in time but even when taking over twenty tablets a day, I was still in a world of pain and no one could fully explain why or help me ease it.

I wasn’t in a good place. I would regularly break down on Pete as I couldn’t cope anymore. The pain had drained my identity and any love for life I still had, I was completely miserable. Pete was my rock throughout. He was always there for me, desperate to do more than he could and however much pressure I put on him, he never faulted in his support for me.

In the early part of 2017 I hit rock bottom. The pain had stripped me of everything that I formerly was, I could never see it improving. I felt isolated and alone, even though I had a large network of family and friends. They could offer sympathy however no one else could experience or understand how I was feeling internally. And no one could help to stop the pain. I felt so low, I really didn’t want to live anymore.

I had been having suicidal thoughts on and off for a few months. I had gone as far as seriously considering how I would go through with it and when. The only person I have ever told about this, up until now is Pete, (and it took me a good few months after the event to do so) not even my Mum and Dad knew.

It was too painful for me to tell Pete about the thoughts I’d been having. I didn’t want to worry him even further and add more pressure on top of the mammoth amount of strain I’d already put him under. I needed to do something, I just didn’t know what. I tried to get an appointment to speak to the psychologist at the NHS Pain Clinic but it was literally months until they could see me. I was on my own one night and knew I needed to talk to somebody so I called the Samaritans.

My initial call to them wasn’t good. Not only was it incredibly daunting to say the words out loud and tell someone about the thoughts I’d been having, it actually made me feel worse. I explained my situation, my mental state and I asked if they had anyone who could help with chronic pain. Their response was ‘I don’t have anyone on my list to help with that’. I was obviously in a delicate state at the time however that response did not help!

After breaking down and hanging up, I sent an angry email to them saying ‘I phoned to ask for support with chronic pain to be told it’s ‘not on your list’. If that is not enough to make me commit suicide, I don’t know what is’. Shortly after I received an email from someone who was much more supportive. Although there was still no direct support for chronic pain offered.

I don’t know what changed, if it was the contact with the Samaritans, the fact that I couldn’t stand to put Pete through it or that I wouldn’t have actually gone through with it. I was gradually able to put those thoughts further back in my mind. They hadn’t gone away, they just weren’t as regular or as pressing. I started to get back to the more normal, proactive version of myself and kept on looking for other things that may help.

London Pain clinic – after some Googling I found a clinic in London which had a Harley Street address and clinicians with a huge amount of experience in pain management. I thought this is the place I need to get into and I don’t care what it costs. Funnily enough because I was paying, it didn’t take long at all to get seen!

We arrived at a very posh hospital with a rather swish waiting area and a lovely coffee machine, slightly different to the NHS. The start of the appointment was just like all the others. I went through my pain history for the 100th time trying to remember every detail, which got trickier as time went on, after seeing so many people and trying so many treatments.

If I was sensible I would have recorded it and just added the next episode on at each appointment, allowing me to just play it on repeat for every clinician I visited.

In brief, the clinician advised that I underwent x-ray guided cervical facet joint injections, a cervical epidural and trigger point injections with Botulinum Toxin A, to stop the muscle spasms in my neck and shoulders. The price tag on this was several thousand pounds, clearly not a bargain though this didn’t put me off.

Don’t get me wrong I’m not saying money wasn’t an issue, it stretched the bank, eating into our savings but my attitude was if it worked, and improved my quality of life then it was totally worth it. I would much rather spend the money on getting better than having a holiday or buying new clothes.

I was very reluctant about having the treatment as I have never coped very well in a medical environment. It was a surrounding that always makes me feel quite sick and I have been known to turn faint, especially with anything to do with injections. So the thought of having the procedure done was not appealing, however my desperation to improve my health drove me to go ahead with the treatment.

I had to go to Weymouth Street Hospital, in London, which was certainly an upgrade to the Norfolk and Norwich University Hospital. My room was more like a hotel room, this took away the clinical feeling and instantly made me feel more at ease. I didn’t enjoy being prepped for theatre however once I was taken into theatre and they injected me, I knew nothing more about the procedure until I came around in recovery, very confused and mumbling rubbish, trying to work out where I was.

The journey home on the train from London was absolutely excruciating despite being given some morphine after having an argument with the doctors about how much pain I was in. The base of my neck and shoulder blades, where they had injected me, was incredibly sore. Trying to sit up and being jolted around on the train was possibly the worst evening of my life, apart from giving birth!

Over the next few days I spent most of it in bed. I couldn’t lift my neck off the pillow without using my hands to lift my head and I was getting a burning sensation in my right thigh, it felt like it was on fire, however to the touch it was normal. I contacted the pain clinic to discuss the burning sensation, they suggested I travelled to London for an examination and MRI to eliminate a prolapsed disc or something else associated with having the procedure done.

I felt like I had been run over by a bus, the last thing I wanted to do was travel to London, just a couple of days after my traumatic journey home. It was agreed I could go to a local clinic for a MRI which cost another £250. There were no abnormalities picked up on the scan so a few days later when I was feeling marginally more human, off I trundled to London again for an appointment at the pain clinic.

I saw the same clinician who was unable to offer an explanation for these latest symptoms. He advised to increase my medication, which was basically defeating the whole point of having the procedure in the first place. He wanted to try to stablise the nerve reaction and then very slowly reduce the medication down again.

The burning in my thigh carried on for over a month. The immediate pain from the procedure subsided however the normal neck pain still persisted. After a couple more visits, the clinician could shed little light on the reason for the continued burning sensation and neck pain. Before considering further surgical procedures that he had discussed with me, he recommended that I started a gentle physical rehabilitation programme.

He recommended I used a physiotherapist from the London Pain Clinic. Commuting from Norwich to London every week or so for physiotherapy, whilst working full time, wasn’t feasible so I had to look closer to home.

I am very lucky to have two good friends who are both physiotherapists, whom are actually married to each other. Both have given me physio support, in this instance, ‘Mr physio friend’ treated me. ‘Mrs physio friend’ is currently helping me with my second episode as she is a Women’s Health Physiotherapist, I will cover this more in a separate blog.

Mr Physio friend has an excellent knowledge and understanding of pain management, and was willing to help. Why haven’t you been to him before I hear you cry??! I had and it didn’t work out (he was one of the physiotherapists listed above).

Why? Because I wasn’t in the right place to accept that I had no physical injury or damage. I couldn’t fully understand that the actual cause of the pain was due to my brain and nervous system being over-sensitised.

At that time I hadn’t been through the ‘process’ (all the scans, tests and treatments) mentioned at the start of this blog. I didn’t believe that there was nothing physically wrong with me and therefore the treatment Mr Physio was providing didn’t work back then. But now the ‘process’ was ticked off and I was in a different place.

The break through

When I say break through it wasn’t one appointment with Mr physio friend and all was sorted. It was still a lengthy journey however compared to the rest of my journey, it was a very short period.

The first appointment started much like any other, by going through my history. We then discussed pain, how the brain deals with pain and how it functions as an alarm system to protect the body from damage. Mr physio friend explained that my body’s alarm system was over-sensitised, my nervous system was in a heightened state and was therefore sending information to my brain, which was misinterpreting this information as my body being in danger.

Due to this my brain was then firing pain signals to protect my body, even though it wasn’t in any danger. My alarm system was continually going off when it wasn’t actually needed. I will talk about this in more detail in a separate blog (remembering I am not professionally trained in this field).

So what was the answer to this problem? Basically I needed to tell my alarm system to shut up and stop being so dam sensitive and the pain would go away. It sounds so bloody simple doesn’t it. Sadly it’s much easier said then done.

There are so many factors that can feed into the body’s alarm system including stress, relationships, emotions, trauma, sensations, cognitions (beliefs about pain), social and daily life. All of it affects how sensitised your alarm system becomes, which in turn impacts how much your brain fires pain signals. The fact that there are a huge range of factors that can have an influence upon your alarm system, can make pin pointing the exact cause/causes pretty complicated.

When talking with Mr physio friend I had to be completely honest about everything that had happened or was happening in my life, in order to build up a picture of all things that could be or had previously contributed to my body’s alarm system being over-sensitised. We discussed the car accident in detail, we also discussed many other significant events, which happened long before and after my accident.

Some of this was very personal and sensitive, especially the longing to have a family so it wasn’t always easy discussing this with a friend who was acting in a professional capacity as my physiotherapist.

If you are a chronic pain sufferer and have been through the ‘process’ and are at a loss to why you are still in pain, then please speak to a physiotherapist who is qualified in pain management. They will help you go through all the other factors in your life past and present, your beliefs and perceptions about your body, which could have an influence upon your pain. It may sound odd and you may wonder how such things can affect your pain but I tried it and this is where it got me!

At the first appointment we set a personal goal which I decided would be for me to run 5k. The thought of being able to do this almost made me delirious with laughter, I was 100% convinced it would never happen.

I left the appointment with some homework, being some very simple neck exercises, to get me comfortable with moving my neck again. I also had to focus on pacing my activity. This basically means, instead of going at things full on and completing a task even if I was in pain and then taking several days to recover. I had to pace my self and stop doing things before the onset of pain or before I exceeded my capacity.

It sounds simple however it’s really not as easy as you think, when the tasks that you are doing in the first place are so simple and basic yet you can’t even complete them without having to stop halfway through. You also have to be more realistic about what you can achieve in a day, which is something I found soooo frustrating and difficult.

Undertaking exercise is shown to actually help pain levels in chronic pain sufferers however this is only the case if you do not constantly exceed your capacity. Most chronic pain sufferers have a certain amount of activity they can carry out before they reach their cut off point or their ‘capacity’, when their pain then kicks in.

If you continually exceed your capacity it is generally only going to make things worse. It will cause your nervous system to constantly be over-sensitised, giving you continual flare up’s of your pain. It can be really tricky to work out what your capacity is and extremely tough not to exceed it at times, it certainly isn’t straight forward!

I would wake up everyday expecting to be able to achieve huge list of jobs and pack loads of things in but that simply isn’t realistic when you have chronic pain. If you do, you will totally burn yourself out. I will talk more about pacing in a future blog as it plays a massive part in managing chronic pain.

At my next few appointments with Mr Physio Friend we didn’t focus on the level of pain I had been experiencing since we last met, instead we always took another step forward by introducing new strengthening exercises. These exercises were designed to turn on my muscles which had been switched off for so long and to make my body stronger.

I would do these exercises at home religiously five times a week. At most appointments we would talk around loading, pacing and how messy the pain vs activity curve can be but we never backed off moving forward, even if I had been feeling really crap.

We would always talk about positive re-framing of pain. Understanding why you are experiencing a flare-up and re-framing how you think about it can have a massive influence on the level of pain and length of time you experience it for.

The exciting part – the first time I ran in six years!

After a few appointments, Mr physio friend said to me “You are going to take this rugby ball and we are going to run round the hall passing it to each other”. Fuck I thought! Is he joking, I can’t run, I can’t possibly run. I’ve spent the last six years worrying about every movement I take, avoiding jolting my neck at all costs and he wants me to run. But guess what, I did it!

Yes on the way home my neck was hurting, I was thinking this is never going to work, yet I was so elated that I had actually ran, (or gently jogged) I didn’t care about the level of pain.

At the next appointment I ran more, this time on the treadmill which felt amazing (my neck was painful for the rest of that day but then manageable afterwards) and I think both of us wanted to cry afterwards. Then the monumental moment came when Mr physio friend told me to start the NHS Couch to 5k programme. This felt insane! I thought I never stood a hope in hell of ever running again. I had totally resigned myself to it never happening and here I was contemplating on whose voice to choose to accompany me on my Couch to 5k journey.

I ended up choosing Michael Johnson, I thought he’d be quite motivational, plus he has quite a cool dude voice. Anyone who has done the Couch to 5k Programme knows that it starts relatively easy with only a few minutes of running mixed with intervals of walking but to me, just running for a couple of minutes was a massive deal!

In the early days I had a lot of pain in my neck and shoulders during the run which would generally continue for the rest of that day. As time went on and I progressed through the programme, I had less pain whilst running and gradually the pain felt after the run reduced in it’s duration and intensity.

Very slowly over the next few months, the pain I was experiencing on a daily basis was getting less intense. I would actually have a few hours in the day when I wasn’t feeling the pain and I was able to do slightly more in a day, my capacity was increasing.

Having windows of pain free time was such a breath of fresh air and kind of took me by surprise. As time went on, I would get home from work and Pete would ask how I’d felt that day and I would say in a surprised manner, actually it wasn’t too painful for half or more of the day. Astonishing!

Over this time, I had learnt that the pain I was experiencing didn’t mean I had anything physically wrong with my body. Even though I was still experiencing pain, at least I was now doing some low level exercise. Whereas previously, I was in pain without having done any exercise.

Multiple research projects have shown that the more chronic pain patients understand pain, the better equipped they are to recover from it. It can help change the patient’s thoughts about pain and aid them when implementing recovery strategies. It can also help the person to make sense of the pain they may still experience during recovery.

It certainly made a difference to my recovery. I can honestly say if it wasn’t for Mr physio friend’s expert knowledge and understanding of pain management and his patience and ability to explain things in a simple way, I wouldn’t have recovered.

By August 2018 I completed the Couch to 5k programme and then went to Park Run. This was a big deal for me, I had just started getting into Park Run before I had the car accident and then it was whipped away from me so I’d been longing to get back to it for all those years.

Pete and quite a few of my friends often went to Park Run so it was a nice social activity to do on a Saturday morning, which I’d had to miss out on for years. It starts at 9am so it’s over and done with nice and early, without interfering with the rest of the weekend. Plus I could eat cake afterwards feeling that I had fully justified the calories.

Justifying the calories I consumed when eating naughty things has always been a big thing for me, since having to stop exercise. I was always worried about putting on weight. Therefore it was even more important to me that when I ate cake, it was worth the calories. It had to be tasty, wholesome homemade cake and not what I call ‘fake cake’ which is the very average cake that you sometimes get from the supermarket or even worse, a ready made cake mixture, blurggh!

Attending Park Run was really useful in helping me get faster and fitter. My time on my first return run in August was 26 mins 19 sec. I got this down to 22 mins 49 sec by Christmas.

So I had done it!! I had reached and thoroughly beat the shit out of the personal goal I had set when I attended my first appointment. I had run 5K and by Christmas I was running over 5k in my training runs from home. And most importantly I wasn’t living everyday in pain.

Don’t get me wrong, the pain hadn’t totally vanished. I would still get days when I’d get neck pain especially after looking at my phone for too long or after sitting on the computer all day or having to sit in an uncomfortable position. Even as we speak today, very occasionally those instances or stress can still trigger pain in my neck and shoulders. However those days were becoming increasingly few and far between and I knew how to manage the flare ups.

The addition of CBD oil

I need to add that after the Pain Clinic injections hadn’t seemed to work and just before I started the treatment with Mr physio friend, I started taking Cannabidiol (CBD) oil. Yes this oil is derived from cannabis or hemp plants but no it doesn’t make you high (everyone asked me that question) as it doesn’t contain Tetrahydrocannabinol (THC), the cannabinoid which gives the high effect associated with marijuana.

A year or so after I started taking CBD oil, the awareness and health benefits of taking it exploded in the media. There are different versions and different strengths available, but the version I took is found readily available online, you can even pick up a low strength in Holland and Barrett I believe.

Sadly I think there are very few, if any published medical trials to support the use of CBD oil for medicinal purposes however I’ve heard so many reports of it having a positive affect on so many people’s health for a wide range of symptoms. I just don’t think those reports can or should be ignored. Call it a placebo, call it what you like, if it works then so be it.

For me, I definitely don’t think it was the stand alone reason I recovered from my pain. I think the insight to pain management and the rehab programme account for that. I needed the basic understanding of how chronic pain works, in order to overcome the pain and I needed the physiotherapy to turn my muscles back on and build strength in my body, to help me become active again.

Once I had conquered this, it enabled me to think about reducing my medication, with the help of the CBD oil. As I was still on over twenty tablets a day I sought the doctors advice on which tablets to reduce and how quickly. I literally had to drop one tablet every few weeks. It seemed that it was going to take an age to completely come off all of the medication and I had no idea how my body would react. After I had dropped a tablet and had managed to go a couple of weeks without feeling any ill effects, the sense of achievement and joy was immense. I so badly wanted to be able to live my life free of medication.

I started to reduce my medication in mid 2018, a few months after starting the CBD oil and the physio work. By April 2019 I had withdrawn all of my medication, the CBD oil was the only thing I continued taking.

Whilst I was successfully reducing my medication and not feeling any increased pain, a small glimmer of hope was sparked between Pete and I, that after all of these years, trying for a family may actually be an option.

We had spoken to my regular doctor several times about starting a family whilst I was still taking the medication, I had also seen specialist clinicians to talk about the risks to the baby. Not all of the medication had been trialled on pregnant women so it was impossible for the doctors to define the level of risk there was, of it having ill-effects upon an unborn baby’s development.

However I knew the risks were significantly heightened and it was a risk I wasn’t willing to take. For me personally, I needed to be off all medication before we considered trying for a baby.

We had years of resigning ourselves to the fact that we wouldn’t have children. Even when I was coming off the medication we had both totally set ourselves up for it never happening or that there would be complications so we didn’t set any expectations. In April 2019 I had managed to stop all of my medication and by May 2019 I was pregnant!! Shortly after finding out this news, I stopped taking the CBD oil as I was unsure if it may affect the baby.

Pregnancy and my second episode of chronic pain…

The shock took me about 6 months of the pregnancy to get over, I’m not even joking. Everyone kept saying “You don’t seem very happy about it”, I was but I was totally overcome by the shock. I was also just hoping and praying everything would be ok with the baby’s health and mine. I was extremely worried about how my body would cope with the strain of carrying a baby.

In truth, I was over the moon about being pregnant, I just wouldn’t let myself show it to the outside world and to be honest to myself, how elated I was. I couldn’t let myself get too excited, as I was convinced it was going to go wrong. I kept my happiness contained as much as I could, as I couldn’t bear it if something bad happened and our good fortune was shattered.

Unfortunately I’ve had friends who have suffered the utter cruelty of miscarriage or still births. I truly don’t know how they’ve managed to cope with it and come through the other side. It must be one of the hardest and most devastating things to experience. I couldn’t rule out that this wouldn’t happen to us. I wouldn’t let myself think too far into the future of living our life with a baby, until I had our baby in my arms.

I was very lucky and had a pretty straight forward pregnancy. I was able to stay pretty active through the whole time, which surprised a lot of people including myself, given my history. On 30th December 2019 I gave birth to a beautiful and healthy baby boy.

This post is super long and I’d be stunned if anyone has made it to the end (you must have been having a very boring day) so I will cover my pregnancy and birth story fully in my next blog. This isn’t because I want to harp on about my child and how cute he is or how lucky I am, it’s because shortly after giving birth I started to experience another episode of persistent/chronic pain, this time in a completely different part of my body.

Given that the pain was related to having a baby it probably doesn’t take too many guesses to work out which area of my body the pain occurred! Yep you guessed it, I developed pelvic pain. I am at the time of writing this (June 2020), still experiencing pelvic pain so I’m back on the pain train, trying to navigate myself to recovery again. You can find out how I’m getting on in my next blog.

In summary – if you experience chronic pain, don’t give up

If you are a chronic pain sufferer please don’t think I’m writing about my second episode of persistent pain for you to think “Oh god what’s the point, it will just come back again”. I had a lengthy period of time when I wasn’t experiencing pain. Everyone is different it doesn’t mean that because my pain returned that yours will, it was just down to my individual situation at the time that it did. It occurred in a totally different part of my body the second time, for a very different reason.

I’m hoping the blog about my second chronic pain episode will actually help illustrate that, if you are fully informed about persistent/chronic pain, it is much easier to manage. However I still wasn’t able to overcome it on my own.

I want to sign this blog off on a positive note. If you are a chronic pain sufferer, I have written the above to show you that however crap it is and however awful you feel, please don’t give up and resign yourself to the pain and a life you don’t want to lead.

I realise how hard it is, not to let the pain consume you but please don’t lose hope. I thought I would never recover however if you have the right support, it is possible to turn things around and improve your health and mental well being. It’s not easy, it’s bloody hard, frustrating, cruel and it’s slow, incredibly slow, with lots of up’s and down’s along the way yet believe me, it is possible!

4 thoughts on “The ‘ache’ in ‘The Ache to Bake’ – the joy of baking and the ache of living with chronic pain

  1. A really interesting read – thank you for sharing.

    I was diagnosed with hypermobility-type Ehlers-Danlos Syndrome last year – one of the many comorbidities of which is chronic pain and fatigue. I saw Mr Physio several years ago for a few sessions and he was very helpful. Fortunately my wife is also very supportive and understanding as her mother has had ME for the past 30 years so she is well aware of the limitations of a chronic pain sufferer.

    Like with yourself, a busy working lifestyle (especially late nights/early mornings) certainly does not lend itself well to pacing and managing energy levels! However, I am a firm believer in ‘Cake Therapy’ so will enjoy viewing your tried and tested recipes.

    I hope you, Pete and the baby are all well.

    Like

    1. Hi Ben,

      Thanks very much for having a read and leaving a message. Sounds like you have a lot on your plate. I hadn’t heard of your condition before but having just read about it, it sounds pretty tough. Great to hear that your wife is super supportive and ‘gets it’, that makes such a massive difference, however it can still feel very isolating at times, even with a good support network around you.

      Pacing is definitely the key to managing it which can be frustrating and like you say, not easy with a busy lifestyle. Babies don’t help with this either!

      I’m glad cake therapy also helps you, maybe you’ll give one of the recipes a go?! 😉

      Thanks again for saying hi and explaining your situation, feel free to get in touch at any time.

      Like

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