Fear

The last month or so have again made me rethink life. I was stopped in my tracks once again; it wasn’t sudden as I had prior warning so to speak, I was dragging my leg around like it wasn’t my own. What was a shock was the sudden shut down of my normal, and the intensity of the pain levels. My back went into spasm and that was it, if you know you know…

I become enclosed in this bubble that only a few can penetrate. In this bubble so many emotions are floating around, ANGER, FRUSTRATION, SADNESS, FEAR, DETERMINATION, ANXIETY. When you have something and someone snatches it from you, it pisses you off right?  Well it’s the same with your health; I couldn’t sit up; stand for more than 5 mins, drive, and shower, make a meal, and so on and so forth.

The wave was huge this time and a swear I drowned a few times, but as usual there are people around me that literally save my life time and time again. After 21 days, yes, I was counting; I could feel my body coming back to some sort of normality. When that bubble bursts, all those emotions are released and you can see clearly again. GRATITUDE, EXCITEMENT, FREEDOM AND AN OVERWHELMING SENSE OF CALM, AND LOTS OF HAPPY AND SAD TEARS, but then I’m also left with this sense of fear when I start to gain control of my body again. I was taught and keep getting reminded that I need to carry on doing the things I want to do and need to do despite the lingering pain but it’s not easy.

Prime example, the simplicity of taking a shower, something that most people take for granted, was a huge mix of emotions. How long can you stand? How long can you sit? Is the water going to irritate your skin? Am I going to be shattered afterwards? During this crisis the first initial shower although quick, felt so amazing I cried as I felt the water wash over me, overwhelming…

Another example, my friend called me and after a general catch up asked me if I wanted to go for lunch. The fear that flooded my whole being was extraordinary. At this point, I had not left the house for weeks, no further than the garden. I pondered on it and thought about all the ifs, but had to remind myself that I do actually want to go and that it’s going to be great. She came and picked me up and we had a lovely catch up. I was in pain when I left and my pain levels were the same when I got back although shattered.

A few days ago, I got back behind the wheel and the sense of freedom is indescribable, as specially as the sun has come out to play. But before I did I was fearful, but I’ve done it before and will continue to do it again. I love the quote “FEEL THE FEAR AND DO IT ANYWAY” I remember when the children were younger and they had an exam or a challenge at school. I would always tell them, it’s never as bad as you think it’s going to be. They would come home and say, “Mum you were right, it wasn’t that bad”. Something I have to constantly remind myself, unless my body is physically telling me NO, that activity is a no go of course.

Lessons Learnt

What doesn’t kill you gives you a lot of unhealthy coping mechanisms and a really dark sense of humour!

Explaining chronic pain Pt1

Explaining chronic pain pt2

 

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Acceptance

After 30 years of my body letting me down in some way, I think I’ve coped as well as one could expect. But as time has not been a healer, there is a little voice in my head still saying; this can’t really be it for me. I am a very strong person, BUT the last 8 days once again have shaken me up and I’ve battled with that voice in my head about acceptance.

Last Saturday was a normal day (my normal) until the evening when I was laying on the sofa and could feel that familiar feeling of a flare kicking in. Some people ask me what it feels like, apart from the obvious pain all over. Well for me it feels like there is a hole in the top of my head and someone has poured a poison (something that burns) down it. I can feel it trickling through every part of my body. Then I had this intense pain in my hands and fingers, so I couldn’t even use my phone or pick up a glass. Then the icing on the cake, my body went into spasm from my upper back downwards and that was it, crisis mode… My bed has been my best friend this week and with an arsenal of drugs and medical aids, I still couldn’t stand or sit for long without intense pain. Anyone that has experienced a back spasm will understand how difficult it is to use the toilet or even have a shower! I made it to the bathroom sink a few times but this morning has been the first time I was able to get into the shower, and yes I have a shower seat, it felt amazing I actually cried.

I don’t tell you this for sympathy, on the contrary… I am a giving person, I am a strong woman, and I dedicate my life to my family. But at times like these I feel weak and vulnerable and extremely pissed off at the situation. I have been open and honest about what life for me can be like and it’s not pretty at times, but I know it’ll pass but when you’re in it, it feels like it’s been going on for months and its only been 9 days…

I have support from my family and friends and through the odd tearful outburst, (more so in private) there is hysterical laughter which keeps me alive. Through all this crap, I am happy, I am grateful and I am truly blessed to which I am thankful.

Lessons learnt

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Real juice stories

 

If you have ever offered someone a piece of fruit or veg and they told you no thanks I’m allergic, you would probably think they were joking right? Well guess what it’s a thing. It’s called Oral Allergy Syndrome (OAS) or Pollen Fruit Syndrome (PFS).

Oral allergy syndrome is a medical condition in which the person affected suffers immediate allergic symptoms in the lips, mouth and throat, usually when they eat certain kinds of raw fruit, raw vegetables or nuts. These symptoms are most commonly itching or tingling, in extreme cases swelling may also occur.

This syndrome that stops so many people from enjoying nature’s gifts emerges because of allergies to the pollens of certain trees or grass or ragweed. For those with OAS, the immune system sees the proteins of some fruits and vegetables as being much like the pollen protein — and causes a cross reaction.

My daughter is one of those people with OAS. She was diagnosed by an allergy specialist at the Royal National Throat, Nose and Ear Hospital in 2008 at the age of 13. From the time she could eat fruit, up until the age of 7, she was absolutely fine.

The primary sensitisation is to the pollen, with secondary reactions to the food. The key factor is that these foods can be tolerated if cooked, because the protein (usually profilin) is heat liable.

As many of you know I have been an avid fan of juicing since 2014. My daughter can smell the apples from upstairs! I have to make sure the pulp is disposed of outside as soon as possible for her sake. When I am unable to juice myself, she will do it for me in record time. Cats, dogs and dust are a big issue too. Over the years she has adapted and manages this very well, we always joke about the fact that if the fruit is soaked in alcohol, i.e. in Sangria, or in a refreshing summer time Pimms she can eat the fruit! Through trial and error she has discovered she is not allergic to some of the most powerful produce on the planet, lemons, ginger, Kale and turmeric, these make a lovely juice for her.

Lessons Learntjuice

I may have some challenging physical hurdles, but I haven’t had a cough or cold since 2013 for which I am grateful. The whole family have been willing and happy to share in my juicing experience.

 

 

Making the right decision for me

Pain clinics often recommend reducing your pain meds if possible and use alternative methods of coping with pain, something I have tried many times and I’m talking decades. After leaving St Thomas’s I tried again with the Gabapentin but my neck spasms became so bad, I called the nurse for advice. She said maybe now is not the right time to try so go back to your normal dose. My hubby always asks me why I am reducing the dose. It’s because I need to see what my body feels like without it, plus I hate taking them. I always feel a bit of a failure when I have to increase the dose again. Having experienced a week long intense spasm that left me incapacitated and needing to add another temporary medication to get that under control, I’m left with a new challenge. Life goes on and in my head I’m building up to my son leaving home for uni. Third time round but I could feel this time was not going to be easy for me. Not particularly because he is my youngest, but because he has had to deal with some health challenges since the age of 10 that I was able to support him with to an extent. I felt like part of my heart had been ripped out. The girls have handled their trials and tribulations like the queens they are and my head was saying my son will too, but my heart was feeling something else.
Time came, he left and so did my daughter who was home for 3 months and my other daughter had a big job on. The dynamics changed in an instant and hit me harder than I thought possible. You adapt and move on… November came and I was ready to try again with reducing my medication. Then I had some bad news that a school friend had died suddenly. That black hole that I am always carefully walking round the edge of, balancing for dear life, knocking back the stresses, well I slipped and fell… the familiar patches of hair loss confirmed it. Adapt, push through and motor on…
Pain was under control and I was feeling positive I could keep reducing the dose, so I did because my symptoms weren’t too bad; I was thinking I can do this. Then bam! Severe muscle weakness in my arms and legs hit once again, not much you can do when your arms and legs feel like jelly. In my head I’m trying to convince myself this is just temporary but whilst I’m experiencing it, it feels like it’s been going on for months. Is it because of the reduced meds, or just a coincidence? I never know. Every time I talked about it my eyes would well up, I could feel every irritated and twitching nerve, couldn’t sleep on my left side or my right. Miserable is the only way to describe how I was feeling, the only thing that was keeping me going was knowing that the kids were coming home for xmas. But how was I supposed to make that oxford journey in this condition, I don’t have to go, but it’s something I cherish doing with my hubby, too many things have already been taken away from me. It seems to feel like for the last few years, xmas time becomes really challenging, could be just Winter and I don’t get along.
Well I gave in, I couldn’t take it anymore I increased the dose and now the symptoms are under control. I asked myself have I failed again? But I’ve decided no I haven’t I instantly felt happier for making the decision to do so. I have decided this was the right decision for me right here right now.
I’m looking forward to making the journey to Guildford to pick up my daughter in a couple of weeks and enjoying the family time I cherish so much. Merry xmas to all that celebrate.

Lessons Learnt
I will continue to do and try different things when it comes to my health, but if it doesn’t feel right physically and mentally, I’m letting it go.

Explaining chronic pain pt2

It is our understanding that these effects of chronic pain fall within the definition of a disability as described in the Equality Act of 2010: (‘a physical…impairment which has a substantial and long-term effect on a person’s ability to carry out normal day-to-day activities’) The effects of pain may have a direct effect in preventing a person from doing an activity, or there may be an indirect adverse effect, e.g. where the person can perform daily activities but suffers pain and fatigue when doing so. This is a common picture with chronic pain sufferers. Therefore, people with chronic pain are entitled to all the provisions under the Equality Act for

‘Reasonable adjustments’ to be made at work if they are managing to work, and in terms of access to all the usual public facilities.

Chronic pain presents a person with many challenges and it is only natural that a person who is greatly affected by their pain will need to learn new methods to manage these challenges. The aim of the INPUT Pain Management Programme is not to cure or reduce pain; instead; it aims to help people to take a different approach to living with constant pain and to work to improve their quality of life. It includes such elements as exercise and stretch, mindfulness techniques, working on valued activities and ‘approaching activities differently.’ The latter can include experimenting with doing activities in different ways, breaking them down into smaller steps, modifying tasks and incorporating breaks and changes of position in order to make overall activities more manageable.

Some people with chronic pain take medications and would rather not take these due to concerns about side-effect. We can help with this on the programme; however it is important to note that reducing or stopping medication does not signify that the pain has reduced or ceased.

Many people with chronic pain have had to give up employment, due to their pain. Many have a goal to return to work in some form, although it may not be to the job role or the hours that they were doing before. If they have not been able to work for some time, it is essential that people with chronic pain are allowed sufficient time to build up activity levels and fitness before attempting to return to work. Owing to the fluctuating and complex nature of chronic pain, it is not always possible to make predictions about how long this process may take; and if someone attempts to return to work too quickly, this may not succeed or be sustainable over time. There are various schemes to help people with disabilities to return to work. These can be accessed through the Disability Employment Adviser at the local jobcentre.

Chronic pain does not always mean that people cannot work; there are people who manage to do so successfully. People with chronic pain who are still working will need to consider and discuss with employers how the new approach and the skills they have learned can be applied in their work situation. Reviewing their support needs, making adjustments to the work environment, and considering different working hours or different ways of working can all be seen as examples of “reasonable adjustments” under the Equality Act (2010), which could enable a person with chronic pain to work in a more manageable and sustainable way. Such adjustments often do not need to be complicated or expensive.

Although the INPUT programme can significantly help people to improve the quality of life, it does not mean that the chronic pain problem will be cured, or that the intensity of the pain will reduce. People with chronic pain can learn to function well even in the presence of pain; however, it is important to bear in mind that living with pain poses daily and continuing challenges.

If you require further information, please visit www.gstt.nhs.uk/input

The INPUT Pain Management Team

Explaining chronic pain Pt1

Before I left the pain management program, the team handed out this print out which I think is a perfect explanation as to what is happening for people with chronic pain.

Acute pain is short term pain – It begins and then usually passes. It usually signals an injury or potential injury.

Chronic pain is long term pain. This is pain that lasts longer than 6 months, and it can go on indefinitely, despite treatment.

Some people living with chronic pain have had an injury or illness that clearly led to their pain, however many others have not. Sometimes it is not clear why the pain has started. When there is a clear initial injury we know that for all tissues in the human body, the healing process is usually complete after about 6 months. So, for people who have chronic pain, the time for healing has passed, but the pain is still continuing.

The symptoms of chronic pain are usually permanent. Chronic pain is a medically recognised condition that causes a great deal of suffering. The causes are not fully understood. It is known that there are neuro-physiological changes in the central nervous system following persisting pain although these are not detectable on commonly used scans or tests. Normal signals of touch, pressure, and movement pass to the central nervous system, but are interpreted as abnormal/painful. Thus pain is felt, even though there is no further damage or injury occurring. This is called central sensitisation. Patients who are transferred to the INPUT Pain Management Unit have usually tried many medical treatments, with little or no relief from their pain. These treatments fail because the pain symptoms are no longer generated at the site of the original injury and (most likely) because the pain symptoms have caused changes in the central nervous system itself, and these changes can be extremely difficult to reverse.

Unfortunately, it is quite common for people with chronic pain to feel that others do not understand or appreciate their pain. At the same time, we know that the pain is very real and is not imagined or just ‘in the mind’. The fact is however, that chronic pain can be confusing for those who do not experience it. It is not possible to correctly guess how much pain a person has just by watching them. A person can be doing activities and look as if they do not have any pain, when in fact, they have a great deal. Certain positions and everyday activities can feel particularly difficult to manage due to pain or fatigue, and may be avoided. Also, at times, many sufferers can experience increases in pain levels, which can impact on mood and ability to function. Over time, a pain sufferer’s life may become very narrow. Helping people to function when they have pain is an important goal, particularly when this can be done with respect and understanding.

Costochondritis

 

Half way into my second week on my residential pain management course my neck went into spasm. The last time that happened was back in May and I literally forgot how painful it can be, which is quite normal. What was even more challenging was not being in my own environment to deal with my pain. I put my soft collar on took my pain meds, made a hot water bottle and went to class all the while thinking, how am I going to get through this… even with the techniques I was learning, such as defusing from my thoughts and feelings and deep breathing,  every breath and movement felt like it was working against me. Unfortunately this episode set off a fibro flare. Not a full blown flare where I couldn’t get out of the bed, although it felt like it and I was very tempted believe me. But a flare that hit me suddenly whilst sitting in class and there was nothing I could do but squirm off the chair onto the floor. I wanted someone to pick me up and carry me to bed but that didn’t happen. Occasionally what comes with my fibro flares is Costochondrits.

What is costochondritis?

Costochondritis is an inflammation of the cartilage in the rib cage. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction. Chest pain caused by costochondritis can range from mild to severe, mine was severe and it still hasn’t cleared up! Mild cases may only cause your chest to feel tender to touch or some pain when you push on the area of your chest cartilage. People with costochondritis often experience chest pain in the upper and middle rib area on either side of the breastbone. The pain may radiate to the back or the abdomen. It may also get worse if you move, stretch, or breathe deeply.

Severe cases may cause shooting pains down your limbs or unbearable chest pain that interferes with your life and doesn’t seem to go away. This is what I was feeling, breathing was hurting and I couldn’t lie down on the floor because it was too flat, and the amount of cushions I had was not enough, the discomfort radiates up into my throat.

What causes costochondritis?

The exact cause of costochondritis in most people is unknown. But conditions that may cause it include:

Trauma to the chest, such as blunt impact from a car accident or fall

Physical strain from activities, such as heavy lifting and strenuous exercise

Certain viruses or respiratory conditions, such as tuberculosis and syphilis, that can cause joint inflammation

Certain types of arthritis

Tumors in the costosternal joint region

Many years ago, on two separate occasions, an ambulance was called for me because I was experiencing severe chest pain and trouble breathing. Of course I thought I was having a heart attack. It was costochondritis… The recommendation is;

Always seek immediate emergency care when you have abnormal and debilitating pain in your chest. It can indicate something serious, such as a heart attack. Getting care as soon as possible limits the possibility of complications, especially if an underlying issue is causing your costochondritis.

If you have chronic costochondritis like I do the pain may return — even with treatment — when you exercise or engage in certain activities. In these cases, you may need to seek long-term care to make sure that costochondritis doesn’t affect your quality of life and ability to take part in daily activities. I have experienced this for many years and deal with it and ride the storm.

The chest pain associated with costochondritis is a common symptom of fibromyalgia. With fibromyalgia, you may experience soreness and pain in your chest in addition to all that comes with Fibro.

This condition usually isn’t persistent. In many cases, costochondritis goes away on its own. Mild cases of costochondritis may disappear after a few days. Chronic cases can last for weeks or more.

Lessons learnt

I keep reminding myself that whatever position I find myself in, be it lying down on an aeroplane with a back spasm or spending 3 weeks away from home on a pain management course trying to learn to do the things that matter to me despite the pain. I can do anything I put my mind to.fb_img_1535873485383

Radio Frequency Nerve Ablation

Well the last lot of injections I had had worn off after 8 weeks or so and I was back to square one. Although it wasn’t very long it felt good to have some relief, these days I’ll take anything I can get. During my last consult a longer term solution was also offered to me.
Radiofrequency denervation (also called facet rhizolysis or radiofrequency ablation) is a procedure to help treat back or neck pain that comes from your facet joints. Each of the bones in your spine has a set of facet joints, which stabilise your back and help your spine to move. Radiofrequency denervation is a treatment that uses heat to deactivate the nerves around your facet joints that are causing your pain. These nerves are called medial branch nerves and send pain signals to your brain if you’ve got inflammation in your facet joints.
Your doctor will use radiofrequency waves (a form of electricity) to heat the tip of a needle which is used to destroy the nerve endings. This aims to stop the nerves sending pain signals to your brain. You’ll only be offered radiofrequency denervation if you’ve had a facet joint injection that showed that your pain is definitely coming from your facet joints. The aim of radiofrequency denervation is to provide longer-term pain relief than a facet joint injection. So how is it done?
You’ll usually have radiofrequency denervation in hospital. You can have the treatment and go home the same day – you don’t need to stay overnight.
You’ll need to lie on your front while you have the procedure. Your doctor may give you a local anaesthetic to numb any pain while you’re having it done. They may offer you sedation too, to help you relax. I have never had injections in my back without being sedated. Your doctor will take X-rays to help them guide a needle to the right spot in your back. They may also need to inject a type of dye called contrast medium to help highlight where the needle needs to go.
Then a small electric current is passed through the needle to help find the nerve that is causing the problem. They will then use radiofrequency waves to heat the tip of the needle and destroy the nerve endings. This will stop the nerve sending out pain. Your doctor may inject a steroid to help with any discomfort you might get after the procedure.
I was told I may experience an uncomfortable burning feeling in my back whilst the nerves die off, which could take up to 3 weeks. The first 3 days felt like a miracle had taken place as I felt no pain whatsoever. I think that was the numbing agent because I then felt the pain. I counted the weeks praying for this to work, and low and behold, the third week I had no pain in my lumber region as I had been experiencing for, well for ever… It has been 4 weeks and I’m thinking is this for real? Although the experience of feeling no pain in my lumber region is wonderful, I have to deal with a ridiculous amount of pain in other areas of my body which slightly dampens down the excitement, I am truly grateful all the same.
Some people have asked me how long it will last; well the nerves are usually blocked for 6-9 months, although it may last as short as 3 months or as long at 18 months. Some people have reported having relief for years. So there doesn’t seem to be a clear cut answer for everyone. I want to be the latter…
Lessons Learnt
Having had this procedure, doing my Pilates is a lot less painful now. Trying to do the things you know will help you in the long run whilst in excruciating pain is not easy and not fun at all. I’m so happy I have finally found a pain management consultant that is understanding, empathetic and willing to listen. I am so thankful.

Facet Joint Arthritis

Barely 3 months into recovery from my cervical disc replacement and I was taken down once again. I wonder how many times I’ve actually said that. What seemed like a normal day October 19th to be exact, (a normal day for me) ended with my back slowly going into a spasm in the evening and me left bent over in excruciating pain.  Here we go again.

After a few days it was evident to me that my already bulging L4/5 lumber disc had herniated. The symptoms I had/having were:

Severe back pain

Severe burning at the front of my thigh

Pain at the back of my thigh down to my knee

Pain in my groin

Tingling in foot and toes

Muscle weakness in the affected leg.

I couldn’t sit down, I couldn’t drive, and I couldn’t walk without crutches, therefore couldn’t go out for the first 2 ½ weeks. I had no choice but to increase my meds significantly which caused all sorts of gastric problems but gave me some form of relief where I could sit for longer than 5 mins at a time.

I contacted my Neuro surgeon to see if he could give me an injection to help with the pain I was experiencing. I was told he doesn’t do the injections himself and referred me to his colleague who is a pain management consultant and anaesthetist. I met with her on the 14th November to discuss what she could do for me. We went over my last MRI, and it’s the first time anyone had been so thorough in explaining every little detail on that scan.  She told me she could give me a facet joint injection at L4/5 to reduce the inflammation, it is this area I have osteoarthritis.

What is facet joint arthritis?

The facet joints are located in the back portion of the spine. The joints combine with the disc space to create a three-joint complex at each vertebral level. The facet joint consists of two opposing bony surfaces with cartilage between them and a capsule around it that produces fluid. These joints allow you to bend back and forward, left and right.

The combination of the cartilage and the fluid allows the joint to move with little friction. However, facet joint arthritis causes the cartilage to breakdown and the joint movement is associated with more friction. One loses motion and as they get stiffer they have more back pain.

I was also offered a dorsal root ganglion block injection at L4/5 and L5/S1 where I have herniations to treat the nerve issue in my leg.

What is a dorsal root ganglion block/nerve root block injection?

The nerves that carry sensation come out of the spinal cord and branch out to the different parts of the body. The dorsal root ganglion looks like a small swelling on the nerve where it joins the spinal cord. It is here that impulses from the nerves are transmitted through to the spinal cord. Local anaesthetic can be injected into the dorsal root ganglion to slow down or block nerve impulses.

A week later I was in hospital having the procedure under sedation.

Looking back I was trying to think if I did anything out of the ordinary to cause this to happen. The only thing I could think of is, I had started visiting my local pool with the support of my daughter. Gentle exercises in the pool that I had learnt in hydrotherapy over the years and a little swimming. I explained this to my consultant because I couldn’t believe that had caused this because swimming is supposed to be good for you right? She asked me if I was swimming breast stroke and I said no because I can’t even swim that stroke She told me when you swim breast stroke your back is arched and it shouldn’t be done if someone has back problems like mine. She feels something I did in the pool had caused this unfortunately. I had only been 3 times and feel very apprehensive to go back.  Her recommendation to me was to do Pilates exercises to strengthen my core muscles, which I know I should have been doing more vigilantly. After my follow up with her I can go back to the pool but no swimming, only walking in the pool and gentle exercises holding onto the side.

Lessons Learnt

I hadn’t even been discharged from physio for my cervical disc replacement and this happened. Talk about kick in the teeth. Using crutches has aggravated my neck and shoulders, hence increasing nerve pain down my arm again… I feel like I’ve taken 10 steps forward and 100 steps back. I was determined to strengthen my back that’s why I started at the pool and I thought I was taking it slowly. I now know it wasn’t slowly enough. Thanks to these injections I think my Christmas will be a little less stressful.

Merry Xmas everyone.