Sh*t

My fear of the dentist has become sort of legendary on the pages of this blog. It’s now no longer a fear `but has evolved into a phobia, which would be fine were it not for the fact that I can see in my future lots of dental work being needed. Which fills me with dread.

The phobia really took hold last year, I was sat in the waiting room and I could hear the sound of a dentists drill going in one of the consultation rooms. As I heard the drill sick reached the back of my throat and I started to sweat. I felt incredibly light headed and I had to fight the urge of just getting the hell out of there…if indeed my legs would have worked. 

I have never had a very good relationship with dentistry. I have a high pain threshold everywhere apart from my mouth. I am incredibly sensitive even a dentists tool checking my teeth can trigger sharp nerve pain. I often wonder if I have more nerves in my gob than the average human being? I also wonder if it is because you are so vulnerable lying their unable to move or communicate effectively that my fear or phobia has now taken grip. Pain happens at every dentist visit, even check ups. My reaction gets the same response from whatever dentist I see, they simply don’t believe that their action has caused me pain or discomfort. To be constantly told that your pain isn’t real by the people who you are supposed to put your trust in just erodes it over time. I’d love to say that as I have got older my visits to the dentist have got better…they haven’t and now a week Friday I will be going for my first extraction since 2003.

Last year in May I was told I needed a filling. Instead of stopping there my dentist in his friendly way that he was probably taught at university as a way to talk to patients then gave me every minute detail of what he would do to fill the tooth. You see the tooth was decayed beyond saving. He would remove all the pulp you know the bit where the nerve sits, clean it out and then fill the tooth. Panic coursed through me as he continued to give me every last detail. You see for this patient the more technical detail I know the worse it is. My heart rate his risen just typing this, even though I know that he won’t be doing this to my tooth next week. Remembering the appointment still fills me with horror.

I duly made an appointment and the earliest I could get was July. Which was crap because it meant I had a two month wait in which to build to complete hysterics. I was all set for July 12th and then the week before the appointment the dental surgery rang and cancelled. My head was all over the place as that was the same week my mum had been told she had cancer but what type and how bad wouldn’t be known until she was operated on. They offered me an alternative date but we had visitors coming so I said I would ring them back and make an appointment. I never did.

I won’t lie it was easier just to forget about the dentist than deal with it and just get it done. That is when I knew that my fear had turned to a phobia because rational sensible Rachel should have taken over and just bit the bullet and got the filling done. Instead I have endured a year of toothache on and off and the fear of developing an abscess.

When my husband had a phone call to prompt him to book an appointment I asked him to book mine as well. I didn’t want to go but the pain in my tooth was becoming more severe. I’d rather go and get the tooth pulled than wait to get an abscess ( I’ve had an abscess before it took three months to sort out as I developed a dry socket). A dry socket is agony but that is still preferable to me than hearing the drill go whilst it is inside my mouth.

So yesterday despite the mounting panic rising within me I went to the dentist. The dentist tried to tell me off about not coming back for the filling so I just told him my mum got diagnosed with cancer and that I just forgot. I didn’t forget I just chose not to remember. He shut right up and apologised. I then told him that the tooth that needed a filling now needed to be removed and that I wasn’t taking no for an answer. He tried to tell me that he wouldn’t remove the tooth if it didn’t need to be taken out. So I told him either he did it or someone else would. He was quite shocked as normally I am really polite and don’t say boo to a goose – always being terrified that being rude would cause more pain. I explained the tooth had been giving me toothache at a low level for months and that I just wanted it out. It is right at the back of my mouth and its being missing will make no difference cosmetically. He said he would take a look. So with my heart beating out of my chest he lowered the chair.

He took a look at it and asked me again if I wanted it removed to which I said yes. He informed me that the tooth was now fractured right down the middle. There is very little left of my actual tooth as it is being held together with a filling. He said due to the state of it he would remove it for me but he would need to keep an eye on the tooth in front of it as that had developed some decay and would need a small filling. I immediately jumped in and told him I didn’t want any detail. Small filling fine I can live with that. I just don’t need to know what that entails.

I was quite surprised during the appointment to find out I still have a fully erupted wisdom tooth. I was under the impression that they had all gone when I was a teenager as I had a few removed due to them trapping a small piece of gum between the wisdom tooth and the next tooth as they erupted. That piece of gum would then balloon forming like a pink bubble that would then cause horrendous pain. So all my previous wisdom teeth had been removed at the dentist. He explained that the wisdom tooth was showing signs of decay and due to its position it would be nigh on impossible to put a filling in. This again would need to be watched as it would need to be extracted. I don’t know if he means by him or if he meant I will need to have to have it done at the hospital. News to me anyway that I have an erupted wisdom tooth.

I was in and out on that appointment, I booked next weeks appointment and then went out into the fresh air. My legs had turned to jelly and I felt pretty close to passing out. Which isn’t nice when you are alone and waiting for hubby to get the car. I thought ( I don’t know why) they had a bench outside and was going to park myself on that. They didn’t so I had to balance myself against a wall in such a way that if I did pass out there would be minimal damage to me.

Two hours later and my legs were still jelly and I was still feeling like I was going to vomit. Just from the feeling of panic that a visit to the dentist will produce. Jay kept telling me how brave I had been to attend when I hate it so much and for stating my case for getting the tooth pulled. I didn’t feel brave I felt awful. Its a difficult feeling to describe. You know logically the fear and how it controls you is out of proportion to the event but you can’t help it. There is no logic to it and it isn’t a case of talking yourself down. For me it is a whole body reaction, I feel faint, I feel like I am going to be sick, I find it difficult to speak, my legs turn to jelly and feel like they will crumple under me at any moment. The whole time my brain is screaming “Shit get out of here”. My heart rate well is probably close to the 200’s the way my chest feels and all the while my exterior maybe cool and showing none of the inner turmoil / fear that I am feeling.

Maybe that is the problem? It seems no matter how many times I tell people I am terrified of the dentist, it is dismissed with “well nobody likes the dentist”. But it is just so much more than that. I will be honest last week when my tooth was really sore I contemplated going to the kitchen shit drawer getting a pair of pliers and removing my own tooth. Just so I could avoid going to the dentist. If you think that is normal behaviour for someone who doesn’t like the dentist… then you have a screw loose.

My gp tried to help and told me there was CBT online courses I could try to get over my phobia / fear. I told her I was sure there was but when your own dentist fails to appreciate how much going to see him fucks you up then me doing all that work is pointless. It’s not like I can up and change dentists any time I like it took us years to get an NHS dentist when we moved here. Many of them now have closed lists. So it simply isn’t a case of moving and finding a more sympathetic one. However Jay spoke to his dentist that morning and she said she would accept me onto her list if I wanted to move. I am giving my dentist one last chance. If he blows it this time I will be taking her up on the offer of moving within the practice.

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PoTs and the Lightning Process

On Tuesday evening whilst having a look at member posts on the group I admin in, a post popped up that deeply concerned me. Now obviously I only have this members say so that this is the case, it may not be true or aspects of it may not be true. However he alleged that a well-known UK doctor that many people pay privately to see after getting nowhere with the NHS when they have PoTs, was singing the praises of a clinical study that was using The lightning Process to essentially treat / cure PoTs. My heart sank and if it is true, it has confirmed a fear that a friend and I have shared for the last 4 years that research into the treatment of PoTS in the Uk was moving towards a more psychological rather than physiological model.

 

I am not naive enough to say that the mind does not play a role in health of course it does. People with depression can manifest very physical symptoms. I have found whilst dealing with anxiety and depression lately that my pain levels are affected. On the days where I am really struggling my pain levels are higher, when I am having a better day my pain levels are back to normal. Clearly mental health and physical health are linked as they are all part of the whole system. However to suggest a process that has many vocal detractors, that has had no properly conducted medical trials that have been peer-reviewed or replicated can treat / cure PoTs is just laughable. It’s like telling a person with terminal cancer that thinking positive thoughts will cure them.

 

Now when you try to research The Lightning Process online it is very hard to actually get any substantial information regarding what the process actually is. I had to search for quite a while last night. Part of the problem is that those that attend the courses ( that retail from between £500 -£750 for a 12 hour course over three days) have to sign (allegedly) a non disclosure document. They are also constantly told during the three-day course that sharing details of the course with others will prevent them from becoming well. The lightning process up until now has mainly been marketed at those with M.E, CFS, Depression, Anxiety, OCD, and Multiple Sclerosis. The main website has fallen foul of the UK Advertising Standards Authority and was forced to remove content that claimed it had cured people of various medical conditions and that it had a success rate of around 90%. From what I have managed to glean from online sources ( which I have provided the links for at the end of this post) it’s mainly based on positive affirmations, cognitive behavioural therapy and emptying your wallet of several hundreds of pounds. It uses a lot of impressive sounding terminology such as neuro-linguistic programming ( a discredited psychological therapy – https://en.wikipedia.org/wiki/Neuro-linguistic_programming, )  neuroplasticity ( changing pathways in the brain) and reducing Allostatic load (stress). It sounds very impressive and when you are desperate, the sum of £500 – £750 doesn’t seem that much if you are going to become well again within three days. I say three days as many of the LP (lightning process) practitioners claim that participants are well within three days.

 

From what I have been able to glean from some very limited research is that it’s all based on breaking the cycle of negative thinking. So at its very basic level its patient blaming, you are sick because you are trapped in a cycle of negative thinking. The negative thinking pattern is causing your physical symptoms – including MS, ME and now PoTs by the look of it, due to the fact you are increasing stress on your body by continually activating your fight or flight response. (http://lightningprocess.com/how-it-works/ ).

 

So for instance if you have the thought “ I feel terrible” you make the hand signal to stop – catch yourself in the thought, you then rephrase it as in “I am doing terrible” therefore making it your choice to be feeling that way ( see the subtle language change that shifts the blame back onto the patient so even if they claim that they don’t blame the patient the subtle change if language makes the patient believe they are responsible for their physical state – what angers me is there would be a national outcry if they tried this shit on with cancer patients). You then tell yourself you have a choice to make you can choose to descend into the pit ( where you allow your physical symptoms to take over your life and continue with the negative thoughts and never get better) or you can choose the life you love. Now what muppet wouldn’t chose the life you love? Who wouldn’t want that in a heartbeat? However if you fail to respond to the process you have effectively chosen to remain in the pit (of despair). You also tell yourself positive affirmations such as “I am strong like a tree” or “ I am a strong genius for choosing the life I love” as you visualise the choice you have made. Sorry only one word for this Psychobabble. Can you understand now why I am concerned that doctors who treat PoTs and Dysautonomia in the UK are singing its praises?

 

A lot of research with PoTs has been around a faulty fight or flight response so I can see why the leap has been made to the lightning process. As many patients with ME ( I hate the term CFS ) have dysautonomia as part of their symptoms, or possibly because many patients who were written off as having M.E but actually have PoTs and EDS (and dubious claims have been made about LP curing M.E), maybe these doctors decided that despite tilt table tests proving PoTs, that somewhere deep within our subconscious we are responsible for causing our own illness through a cycle of negative thinking. If you aren’t offended at any level that it is being suggested that your negative thought patterns are making you sick…….then there really is no hope for you.

 

The LP is so condemning of negative thoughts that to doubt or to criticise the process is seen as a reason why you haven’t been cured. From what I have read those taking part in the process are told to leave their analytical thinking at the door. There is even a suggestion of a screening process before you are allowed to attend the course. The practitioners claim that you have to be ready to attend so this is why they conduct a home study ( a basic telephone interview). Many of those who have spent the money to attend the course have said that the interview is a test to see how compliant you will be. Those who have attended the course and failed to respond to the process are quite often told by others who claim to have been cured, that they didn’t try hard enough, they didn’t implement it properly, they weren’t open minded enough ( whilst typing this I keep wanting to add “ to allow Jesus into your life” because let’s face it, it sounds like a cult. Handing over your money to find enlightenment).

 

Furthermore I have to say on reading some of the testimonials from those who say their illnesses have been cured by LP, sound very much like those people who have been brainwashed in some religious cult. They all say the same thing and usually end with the same accusatory tone that if the process didn’t work for you then you a) didn’t try hard enough b) don’t want to get well. Back to the old blaming the patient game for those of us who chose not to get better.

 

The major problem with the studies that have been conducted is that they have been so informal as to have patients with no official diagnosis provide a self diagnosis ( on it’s on page at the bottom it shows that the patient results are from people who have self diagnosed – so may not actually have the illness they are claiming to have http://lightningprocess.com/research/ ) also due to its technique of only accepting positive affirmations and to condemn anything that could be perceived as negative of course when you question people about how they are doing after spending so much money on what could be bought in the self-help section of a bookshop, they are going to tell you that they have improved. They have been told that to say that they are sick, worse not doing well is not following the process……..how can they say anything other than they have improved or are living the life they love?

 

I am always concerned when I find Doctors are conducting clinical trials on psychological approaches to treat physiological conditions. To me it’s lazy medicine, it’s a chance to shift the focus away from the doctors lack of knowledge / scientific breakthroughs and pushes the fault for the illness or disease back onto the patient. Any doctor that suggests this form of treatment to me will just get a punch on the nose.

Now again for the record I will state it was alleged in a group I am admin in, that a certain UK Doctor who is famous in PoTs circles is singing the praises of a clinical study into using the lightning process to treat / cure PoTS. How true this actually is, I don’t know. So there is no need for panic stations however I would love to hear from anyone in the UK who this treatment has been suggested to (who has PoTs) or who is part of the clinical study.

I also wonder how effective saying stop and repeating positive affirmations will be when my blood pressure drops to 70/40? or when I dislocate a joint if it will pop back in if I tell myself I am strong like a tree?

Resources / Links

Official Lightning process website

https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

http://forums.phoenixrising.me/index.php?threads/a-balanced-view-of-the-lightning-process.35835/

https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.bqrkDAmny#.ri1ZbXzVk

http://skepdic.com/lightningprocess.html

Anxiety

I have always been quite an anxious person, culminating in an anxiety overload and a major bout of depression back in 1999. It took me a long time to get a grip of them through Cognitive Behavioural Therapy and pharmaceutical means. For a very long time I had considered anxiety and depression a thing of the past and then Friday 8th August my old foe anxiety / panic attacks came back with a vengeance.


Those of you who are regular followers of my blog know that I have been having treatment for B12 deficiency. Anxiety and depression can be a symptom of low B12 levels. That wasn’t the case with me, my symptoms were pins and needles in my hands and pains in my legs. Both symptoms were worse on my left hand side.


To treat the B12 deficiency I had to have injections every other day (or as close as I could) of B12. My initial treatment was limited to 6 injections which doesn’t follow any of the best practice guidelines but seems to be how those who are B12 deficient are treated in the county in England where I live. It has meant enormous upheaval for both myself and my husband getting me to and from appointments. Not helped by the fact my dogs have a voracious appetite for furniture if they are left alone. Some days my husband has been able to come with me, other days I have had to take a taxi alone.


Fridays injection would have been my fourth with two more scheduled the following week. I was going to take a taxi down to the surgery and if possible get one back home. All was going well until a few hours before I was going to leave for my injection. Out of the blue I was filled with a sense of panic. This is quite unlike me and the more I tried to calm myself down the worse it got. I simply did not want to deal with people or to leave the house. I had no knowledge of what the perceived dangers that lurked outside were, I just knew I could not go. As silly as that may sound to people that have never experienced that kind of thing.


The night before had been filled with nightmares, I had slept but on several occasions I was woken up by the sheer terror of what had played out in my dreams. The first dream I remember was I was involved in a plane crash. I am terrified of flying a phobia that has got worse over the years, so for me to be on a plane in my dreams is quite laughable it just wouldn’t happen. The next dream was my house was enveloped in a swarm of bees. I was alone in the house and no matter how quickly I ran from room to room shutting doors and windows the giant bees (they weren’t normal sized ones) threw themselves against the glass. I was filled with panic as I searched every room for my dogs trying to ensure their safety. As the swarm entered the house the dream obviously became more than I could handle and I awoke (again) with a start. Not a pleasant night….which has been followed with a night of insomnia what joy!


I mentioned my vivid dreams to my husband the following morning who remarked it was odd that I had suffered from nightmares as I normally never remember my dreams. Looking back now something was obviously troubling my unconscious mind. The plane crash was obviously my overly acute fear for my safety. It could be suggested that the plane some how signified the medical situation I was going to be in the following day but I think thats a stretch. The swarm of bees I think signified the danger of the outside world. Shutting doors and windows was a way of protecting myself from that danger. Who knows these are just the ramblings of someone who hasn’t slept so far tonight. Its coming up for 2am in the UK as I write this.


As I said earlier I felt fine in the morning and really didnt give the dreams anymore thought until discussing the days events with my husband later in the evening. 


I loath feeling anxious about nothing specific. I couldn’t tell you what the threat outside was that so filled me with dread. I sat on the sofa for over an hour wondering what the hell to do. I didnt want to miss the appointment, mess the dogsitter around or give in to my fears. No matter how hard I battled I just couldn’t get in control of my fear. In the end I rang my husband at work something I try and avoid doing as personal calls are frowned upon. I talked through what was going on in my head. 


Luckily my husband has also suffered from panic attacks and anxiety in the past. He asked me if I knew what I was afraid of, told me that cancelling wasn’t the end of the world. He would now take me to all my appointments and we would manage. It was so nice to hear his calming voice at the end of the phone. He asked me if I wanted him to come home, which I didnt need because the anxiety was about leaving the house. As long as I remained inside these four walls I felt safe.


By the time I had called my husband and cancelled everything else I was exhausted and slept for 2 hours solid. Its probably why I am unable to sleep tonight. I felt a wave of calmness start to wash over me and when I woke up I felt like I was back to being me again. The whole thing had seemed very odd and surreal. I have had that kind of fear before but not for many years and it troubled me as to why it had suddenly raised its ugly head again.


CBT taught me to analyse and explore my feelings so I spent the rest of the day trying to figure out what had caused this reaction. My husband had already told me during my call to him he felt it had been triggered by a mixture of tiredness and the fact that I so very rarely go out alone. Plus I was going out alone into a medical setting. Medical settings always trigger an element of fear but I can normally control it. The more I thought about it the more I had to agree with him.


For normal people going out by yourself is something you do without a backwards glance. Before I got sick I would go out regularly unaccompanied. I would drive to see my family and friends. I would pop into town to do some shopping. Leaving the house by myself was not an issue. Since 2008 I have very rarely left the house alone. It has almost become that my husband is now my safety blanket, or anyone else who is with me when I leave the house. I feel very vulnerable now when I am in the big wide world. Before I felt I could handle myself in any situation. Now the world is full of fear for me. Fear that I could pass out or fall whilst out in public. Fear of being abused because of my disability. Fear that if someone should physically attack me I wouldn’t be able to fend them off. Things I rarely considered when I was well unless I was walking in an unlit car park late at night going back to my car.


It is not my fear that stops me leaving the house it is my physical disability. I need a wheelchair if there is going to be any walking involved or if there will only be a tiny bit of walking involved I can get away with crutches. Crutches come with a price though as my shoulders, elbows and collar bones complain for days on end afterwards. So with my limited mobility I always need someone with me. Someone to push my wheelchair or someone to drive me right to the door of wherever we are going.


Going out accompanied I never have any fear. I don’t feel vulnerable or fragile or less of a human being. Alone I feel all of those things.


In the last few weeks I have been out of the house more times than I have been in months. I was ok the first time I went out alone but I just couldn’t do it Friday. I am angry with myself for being such a coward and giving into my fear. I am annoyed that I didnt put my CBT into practice and try and rationalise the fear. 


The problem is CBT only really works if you know what specifically it is that you are afraid of. That way you can explore the issue, rationalise your fear, work out “well what’s the worst thing that could happen?”, how you could prevent the worst thing from happening and how realistic it is for it to actually take place. When the fear is unspecified you don’t know what the worst thing is. There was no voice in my head telling me what I was afraid of. I just knew I didnt want to leave the house and the thought of it was making me anxious to the point of being tearful.


Sometimes I really don’t appreciate all that I have been through since getting sick. I dont give myself enough credit for achieving the things I have. I am determined not to let this little set back make it impossible for me to leave the house again. I will go out alone again just not for a little while whilst I work through what the possible triggers were and why the fear was so all consuming.


I just need a little time to build my confidence back up and move on from the events of Friday.

 

A weighty issue

My weight has been a major issue all my life at the age of 12 months I was placed on a diet by the health visitor because I had tripled my birth weight of 7lb 13oz. I look back at the pictures of me as a baby and I have seriously asked my mum how on earth could she take that ugly thing out in public? she laughed and said I loved you!

 

I know now that it wasn’t hunger my little body was suffering from but an excessive thirst, even as a baby I was showing signs of dysautonomia (polydipsia) but it wasn’t picked up by anyone. I was only ever tested for diabetes as a child due to my voracious thirst which of course always came back negative.

 My mum and dad have often told me that I would suck on the teats of the bottles so hard that the sides of the bottle would touch and I would create such a vacuum that the teat would disappear inside the bottle, going off like a shotgun when I finished. Having spoken to my mum today she agrees with me I wasn’t hungry it was my thirst I was trying to satisfy and to this day I am constantly thirsty.

During those childhood years I was taller than everyone else and heavier than everyone else. On occasions when I stopped growing I may have been considered a little pudgy around the middle but I was never fat / obese. However being so different from everyone else (leaving infant school with adult size 2 feet and being just under 5 foot at age 7) made me extremely body conscious and hyper critical of every square inch of my body. I was never whippet like, unlike the rest of the girls that I hung around with, I was normal but not rake thin.

 

This insecurity about my weight has followed me all through my life. I have been influenced by the media throughout my life. As a teenager I had a subscription to Vogue magazine. I remember one article quite clearly, which followed a day in the life of the supermodel Naomi Campbell. I remember at the end of the article it said something like “oops I forgot to eat today”. Forget to eat? I can tell you thats never happened in my life! How can anyone forget to eat or have so much control over what they put in their body that they don’t eat? By the way Naomi wouldnt fit in a sample size these days, such is the way the fashion industry strives for thinness.

 

By the age of 17 I had already been to weight watchers and slimming world. I think the heaviest I had ever been when I went to these classes was the top end of 10st  / 140 lbs (perfectly fine for my height of 5ft 8in well within a normal BMI). I look back at the photos of when I was a teenager, when I considered myself obese because I wore a size 14 and think what an idiot. In those days a size 12 would have been acceptable, a size 10 would have been positively dreamy but no I wore a size 14 and in my mind I was an elephant. I think of all those wasted years when I looked stunning and healthy, spent on relentless diets to achieve thinness (perfection) and I think that is what coloured my relationship with food so badly.

 

By my early twenties I had developed a little known eating disorder called “binge eating”. With binge eating you starve yourself for a day or two and then whilst you are starving yourself you plan what you are going to binge on with meticulous precision. Working in food retailing was a binge eaters heaven. All day surrounded by the food you were planning to binge on when you finally allowed yourself to eat. I dread to think how many calories I would consume during one of my binges.

 

Occasionally after a binge I would throw up, I probably made myself sick only on a handful of occasions. The problem was my gag reflex, it was pretty non- existent and sticking my fingers down my throat never produced the desired results. With hindsight I am glad that I couldn’t make myself sick  because if I could of I would have then gone on to develop bulimia. Sometimes my wonky body does me a favour.

 

Around the same time that the binge eating was going on I developed a major depression and had what can only be described as a mini breakdown. I ended up having a lot of counselling, a community psychiatrist was involved and I also had to go to the local mental health unit once a week for almost two years. It was only at the mental health unit that I revealed the issue of binge eating. Through the support of my shrink and some hard work put in by myself with strict adherence to a cognitive behavioural therapy regime, I broke the cycle.

 

I am not cured of binge eating, I will never be cured as there is some place at the back of my brain where this little devil resides. In times of stress when I haven’t been able to eat this little devil bides its time before striking. Unfortunately my husband is a binge eater too and has very little control over his demon. Living with me is pretty stressful. Hubby isn’t a drinker (although we both smoke) his stress relief is food and the more calorific it is the better. It is hard for me when I am trying to be “good” when he brings all the “naughties” into the house. When the binging stops he always apologises for buying the food but as I always say to him, no one forces me to eat the stuff. I suppose its like two drug addicts or two alcoholics living together, its not a great environment to control that addiction.

 

In 2008 I was placed on steroids for my then diagnosis of myasthenia gravis. It was the worst thing that could ever happen to me. Steroids made me ravenously hungry and in 9 months I had put on 5 stone in weight (70lbs). I was the heaviest I had ever been and was wearing size 26/ 28 clothes. I truly was the monster I had perceived myself to be at age 17. I literally couldn’t stop eating. I was so ashamed of the way I looked I hid away. Refusing visits from friends and declining visits from family. I have one picture of myself from that time and its my fat shaming picture, to remind me never ever to get to that size again.

 

I have lost all the weight I put on back in 2008, for years I was stuck at being 3 stone lighter. I was still enormous wearing a size 20/22. I felt disgusted with myself but lacked the willpower to do anything about it. I felt ugly and constantly berated myself for not looking good. All the time celebrities kept getting thinner and thinner.

 

Last year I lost 2 1/2 stone and was the thinnest I had been in years. I felt fabulous, I have though found it incredibly difficult to keep that weight off. Currently I am very limited as to what I can wear. My weight has been fluctuating wildly and I am fed up with not being in control. I have a wardrobe full of lovely size 16 clothes most of which don’t fit. I am gutted that I have let it get this bad. I know that my crazy health situation has a massive part to play in this. Food is used in our house of a way of cheering ourselves up of dealing with stress and celebrating happy events. Our whole life revolves around food.

 

My health being so bad has upset me. I am not depressed its just some days it hits me really hard how bad things have become. The ultimate humiliation was having my catheter fitted by two complete strangers. I am an intensely private person and to have these people messing about with my nether regions upset me. I know it needed to be done and I was grateful as it provided some relief however when you can’t control basic functions like urination it scares you. It also made me dreadfully unhappy for a time.

 

I now feel back in control of things although my bladder has played up (not to the extreme of the end of June), my dysautonomia has been awful during this heat and my pain levels have rocketed I am back to being happy again. Not a grinning idiot kind of happy, just the kind of happy when you can accept what’s going on in your life. Even if I am carrying a few more pounds than I would like to I am back to refusing to let my weight stop me doing things like seeing old friends.

 

I hate the fact that so much of my life has been consumed by what I look like and how much I weigh. There is so much more to me than that. I have many regrets because there are things I have put off doing or haven’t done because I didn’t look good. This madness has to stop, especially when my illness is also trying to prevent me from doing things!

 

I  do feel dreadfully sorry for teenagers these days due to the images they are bombarded with. Due to photoshopping, airbrushing etc celebrities are held up to be the ideal, a size 8 or 10 (uk sizes) is now considered obese. You have to be a size zero or now a double zero to be considered perfection. Too much emphasis is being placed on looks instead of inner beauty. It makes me angry with myself that I allow my body image to be influenced by the fakery portrayed in magazines. I am sick for goodness sake and there are more important things in life than looking like you are dying from starvation!

 

However here I am again on another diet to lose the weight I have rapidly gained due to being on another few weeks of eating junk and not being able to wear the clothes I want to. There is no helping me.

 

Sleep and Chronic Pain part 3

Sorry this post isn’t exactly how I wanted it to be. Its been a rough week and a humdinger of a migraine and recovery from it have hampered my blogging. So the post isn’t completely polished but I hope its of some use to you.

I would just like to do a quick shout out to George Barron who is the author of http://www.myastheniablog.com, who kindly commented on my post about technical difficulties and has a link to my blog from his site. For those of you with MG his blog contains great information regarding medical studies and peoples stories about life with MG. Its well worth taking a look.

 I’ve been chatting about Chronic pain in my last few posts and suddenly  I became  aware that some of my readers may not know what the difference is between acute pain and chronic pain. Don’t worry you aren’t alone! I had to look it up myself to ensure that I had it right in my own head! My basic assumption was Chronic pain was something you had for a long time not related to any specific injury. I struggled when it came to acute pain so I did a bit of research.

This website has a great explanation of Chronic pain v acute pain
http://my.clevelandclinic.org/services/pain_management/hic_acute_vs_chronic_pain.aspx

So acute pain normally happens suddenly like stubbing your toe ( happens quickly and the pain subsides relatively quickly as long as you haven’t broken something), after surgery, dental work, etc. By calling it “acute pain” doesn’t diminish its severity, broken bones hurt, post operative wounds hurt. Its just acute pain lasts for a period of hours / weeks / months, up to depending on whose article / research you read 6 months.

When the pain you suffer from is moved from the acute pain status to chronic pain status, it again depends on what sites you read /  what research you’ve consulted and not forgetting when your doctor changes its classification. Chronic pain is usually diagnosed after 6-12 months. Long after an original injury or source of the pain should have healed. I’ve had back pain since I was 18 years old. This is classed as chronic pain, many years have passed since the original injury but the pain has not gone.

My chronic pain wonders up and down the pain scale. I am never in a position where I have no pain. On a good day it can be around a 2 or a 3. On a bad day it can be a 7 or an 8. There is never a day without pain and the same goes for nights.

I always find the pain scale quite inadequate to deal with describing pain. The language doctors use to describe pain is also quite confusing to me. They use words like is it dull, sharp, burning, stabbing. I remember the look of amusement on a junior doctors face when I told her my abdominal pain felt like I had swallowed a gorse bush.

The link between chronic pain and poor quality of sleep is well documented with many scholarly papers written on the subject. There are research trials taking place currently looking at using cognitive behavioural therapy to help people manage their pain and thus help them sleep.

I’m in favour of anything that helps chronic sufferers sleep better. Without sleep pain seems to intensify, we can become moody, emotional and function poorly during the day. The more sleep we don’t get the worse we feel, a vicious never ending cycle.

I do have a problem with CBT being talked about as the great cure all. I found CBT very helpful when I suffered a major depressive episode many years ago, it helped me rationalise my feelings. I’m sceptical of its benefits when used with chronic pain. To me its like teaching Grannie how to suck eggs. If chronic pain sufferers haven’t already developed their own coping strategies how the hell are they managing to function? Also how many of these researchers live with chronic pain, how do they understand what we go through every day and night? CBT has its uses but to me it smacks of “pain is all in the mind”. Too many of us with chronic pain have been told “your pain can’t be that bad, your smiling and talking” or ” we can’t find anything wrong with you” or ” your pain can’t be that bad”. Adding a referral for CBT into the mix can make the sufferer suspicious that yet again they are being told their pain is in their head and its all “mind over matter”.

Chronic pain sufferers use their minds throughout the day to distract themselves from their pain its a full time occupation. Which is why I think the nights are hard for us, there aren’t the things going on at night as there are during the day. At night we are left alone with our pain. It either stops you going to sleep or wakes you up from it.

I don’t have any magic cures or suggestions to help you. I really wish I did as I would like to get a decent nights sleep. Its important to remember when you suffer with chronic pain / sleep deprivation or both that you aren’t alone. Seek support from anywhere you can, friends, family, medical professionals or the internet. There are some great support networks out there with people going through the same things you are. If you are in pain speak up don’t suffer in silence!