Normality??

My husband is away for a few days getting surgery on his eyes - they are actually replacing the lenses rather than laser surgery! Anyway, I decided that I would a bit of an experiment while he's away to see how well I can function.
It started well this morning - I went back to sleep for an hour and then lay for awhile semi-comatosed, thinking that I wouldn't bother after all! Anyway, I pushed through and had a bit of lunch, then hung some washing out and cleaned the bathroom. I was sweating like mad and immediately felt like that axe in my head reappeared, but as I often feel like that anyway, I'm going to push on. The kids have been informed and told to call an ambulance if they find me collapsed in a heap somewhere!
After resting while doing some admin work on the laptop, I'm going to have a bath in the lovely clean bathroom before collapsing again (baths and showers always tire me out!) for a little while before tea - which is going to be easy as it's leftovers which just need reheating in the microwave.
I have a few other housework things lined up for tomorrow so we'll just see how it goes.
Take care 😳

Creamy Mushroom Pasta

Hello

I'm still struggling with sleep. I tried a different tactic last night but was still awake until the wee small hours. Feeling a lot of pressure under my eyes, at the top of my nose and over the top of my head today along with increased pain on the right. Anyway, I thought I'd share another recipe - I made this one last night for my dinner as the rest of the family were having pizza.

Creamy Mushroom Pasta

I used small soup pasta shells for this but you could use other pasta and cut it (or break it before cooking).

Ingredients:

3 large mushrooms, chopped very finely

4 spring onions, chopped very finely

2 cloves garlic, crushed

150-200g pasta

1/2 cup of cream (or dairy free substitute)

Method:

1. Cook the pasta according to instructions.
2. While the pasta is cooking, fry the onions and garlic in a little oil, until the onions begin to soften. Add the mushrooms and fry for about 5 minutes.
3. Add the cream and some seasoning to the onion and mushroom mix.
4. Add the pasta to the creamy mixture and stir to distribute evenly. Serve and enjoy.

This will serve 2 people. As I struggle to eat a lot these days, it made 3 portions for me and I froze the remaining 2 for another day. Also, the measurements are approximate - experiment to suit your own tastes. You could use regular onions or shallots, miss the onions out completely (my dad's choice!), substitute with other veg (I'm thinking courgettes would be good and are still nice and soft). I feel cooking should be fun and a personal thing as we all have different tastes or dietary requirements. 

Have a great weekend 😎

Tiredness

I hardly got any sleep last night between both sides of my jaw hurting and my knee and sciatica flaring up too.
I decided to have a break from trying after a few hours and a few more chapters of my book. Eventually fell asleep and caught up by sleeping most of the morning. Why is it that I can sleep first thing in the morning but not at night when I'm meant to? No matter what I try, the only times I fall asleep quickly at night is when I'm beyond exhausted, and then I wake up really stiff! I'll continue experimenting with different ideas to aid sleep and hope I hit on something that works consistantly. I think some of it is psychological as I feel very sore on the side I've slept on (nearly always the left as the right is too sore to manage more than a few minutes) when I wake up. The rest is physical as the pain just gets in the way.
Take care 😴

Paying The Price

After my day out yesterday, I really struggled getting to sleep last night. I feel like I could write a book about the many possible sleeping positions I have tried - a kind of Karma Suture of sleeping!!
I'm sore as always today, but feeling reasonably well for a day after some kind of activity. Having said that, I haven't done much yet as I managed to catch up on a little bit of sleep this morning. Hopefully the pain levels will remain low and I'll get a better night's sleep and then have the energy to do a bit of housework tomorrow.
Take Care 😊

Out on day release!

So I went into town today. We dropped my daughter off for her college induction and then I had half an hour of fun at hobbycraft before a cuppa and a muffin (cut into little pieces of course!). And then we went to see The Meg at the cinema. A couple of hours watching the Stath playing the OTT hero is always fun! I was already struggling after that but we managed to get the weekly shop done on the way home.
I've been in bed since but hopefully it won't take too long to get back to my version of "a good day".
Take care 😴

Keep on swimming!

Feeling very dizzy today but have battled through so far and managed some work and reorganised the top of my chest of drawers with all my work related notebooks and textbooks.
The dizziness is certainly one of the worse symptoms to cope with. I know from speaking to people on forums that I'm not alone in this thought.
I have the usual feeling that something is slicing through the top of my head and the right side of my face feels more swollen than usual. But, I'll do my best to keep on swimming and try to get through another day.
I've got rhyme/song stuck in my head now - just keep swimming!!
Take care 😣

The morning after!

Today, I'm feeling quite a lot better from last night. I eventually had a fairly good night's sleep and then slept all morning too after having breakfast and meds.
I've awake a sitting up for a couple of hours now and spent about an hour talking with my mum and daughter who popped round. I'm organising my daughter's murder mystery birthday party so we were going over invitation details.
Pain is picking up a bit again now, so I'm going to try to have something to eat and will just be taking things easy for the rest of the day.
My youngest goes back to school tomorrow and the middle one has a college induction day on Wednesday so we'll be back into a routine again.
Take care ☺

Sunday Night

Really struggling tonight. After managing to make some dinner I then attempted to eat it, which wasn't a good idea it seems. I made toad out of the hole (it never works when I try to put the sausages in the batter!). Anyway, I managed 1/2 a skinless sausage, 1 Yorkshire pudding and 3 pieces of cooked carrot, all chopped into tiny pieces and smoothered with gravy. Just that amount really hurt and I was already struggling with pain and dizziness after making it! Yorkshire puddings are one of my favourite things and I was really looking forward to them - I forced myself to finish at least one, because I knew I needed food and I like them (with a little bit of vinegar too - the best way to have them!!).
My poor decision making continued and I decided to have a bath which always tires me out (showers do too), but tonight left me in agony. My trigeminal neuralgia is flaring up really bad across the top of my head. Feels like huge pressure and sharp cutting or slicing feeling.
I know they say what doesn't kill you makes you stronger but I really don't want to be that strong!!
Think I'll probably finish my book tonight as I think sleep is an option until this settles down.
But tomorrow is another day and my beautiful granddaughter is coming over to see me so I think about that and it'll help me get through.
Take care 😱😉

Helpful Links and today (so far)

I've just been adding some links to pages and organisations where you can find information on TMJ disorders and trigeminal neuralgia.

Today started bad, after I lay on my right side for a bit this morning before getting up. The right side is the worse side and I can usually only lie on that side for about a minute but I managed to position the pillow with a bit of a hollow and dozed off for a bit. The whole right sight of my face was in pain when I woke up! After painkillers and a nap (on my left and back!) I'm feeling a bit better but the nerve pain is firing a bit more often than usual.
Unfortunately, I suffer quite a few additional symptoms other than pain and limited jaw mobility. The nerve pain I've already mentioned. One of the other more debilitating issues is constant dizziness which is apparently due to the labyrinth inside the ear which controls balance being affected. Swelling around the temporal bone and muscle cause this as the labyrinth is situated very close to them.
I also have sound sensitivity (hyperacusis), a constant whooshing sound in my ear and a feeling that my ear is blocked or full of fluid (it isn't - I've had them checked, repeatedly!). I have pain and a feeling of pressure under my eyes which feels like sinusitis, but again it isn't.
I also get really bad headaches. I've had a constant low grade headache all the time since the disc displaced fully but I've gotten used to that. The headache can become much more severe though and even get all the way up to a migraine sometimes. The more severe headaches usually happen 4 or 5 days a week and thankfully the migraines less often.
From my discussions with fellow sufferers in support groups, it seems that most of these symptoms are common in severe cases. It's amazing how one little bit of disc tissue not doing it's job properly can cause so many issues and seemingly be very difficult to fix. Most doctors and dentists can't even agree on causes of the issues which then means there are no standard treatment protocols. I think there are lots of causes which adds to the difficulty of treatment. But I'll maybe leave all that for another day to mull over!
Take Care 😊

Nutritious Cream Of Tomato Soup (Easily made suitable for vegans)

I thought it would be a good idea to share some recipes which are suitable for anyone with limited jaw use and that are healthy and nutritious. I used to love cooking but these days, not only do I struggle with cooking but I struggle with maintaining an appetite. It's not unusual for me to have microwaved porridge for lunch or dinner as it's quick and easy to make and eat! But, we all need good nutrition, and those will illnesses probably more than most... so here we go!

I'll be clear from the beginning, I'm not a food blogger and so I don't have lots of lovely pictures of preparation and final result. I'll try to get some prep photos for future recipes though.

Nutritious Cream Of Tomato Soup (Easily made suitable for vegans) 

Ingredients:
2 large tomatoes
1 large onion
3 cloves of garlic
1/4 jar of sun-dried tomatoes (plus some of the oil)
1 tin (400ml approx) chopped tomatoes
3 tbsp tomato puree
1/2 cup of split red lentils
1 vegetable stock cube
small carton of cream (for a vegan option use a dairy free substitute - in the UK Alpro Soya or Oatly do dairy free cream or you add some dairy free plain youghurt)

N.B. I'm not really one for measuring things when I cook so these amounts can be varied to taste.

Method:

1. Cut the tomatoes into quarters and the onion into large pieces and place on a baking tray with the garlic (peeled and lightly crushed under a knife). Drizzle with some oil from the sun-dried tomatoes and season with salt and pepper if you wish. Roast in oven at 180 C for 20 minutes.
2. Remove roasted veg from oven and allow to cool. Once cooled, remove the skin from the tomatoes (this is optional). 
3. Put the roasted veg, the sun-dried tomatoes, the tomato puree, chopped tomatoes, lentils and stock cube into a large saucepan. Add about a pint of water and heat over a medium heat. Simmer, whilst stirring occasionally for 20 minutes. 
4. Remove from heat and puree in a blender or with a hand blender until smooth. Return to a low heat and add the cream or cream substitute and stir in. Heat for a few minutes.
5. Serve and enjoy. If you can manage bread, have some but if not the soup is quite nutritious and filling on it's own.

I freeze single portions of the soup to have on other days which is very helpful when you're having a high pain day and don't want to cook - simply reheat in the microwave or on the hob. Personally, I freeze things with cream in although many people say you shouldn't! It's always worked fine for me, but if you don't want to, just skip adding the cream to the portions for the freezer and add when you defrost. I'm pretty sure it would taste fine without any cream in and this will save hassle of using small amounts of cream or substitute - these recipes are all about minimum hassle. You can just share the whole pan with the rest of the family if they want some!

Introduction - The Sequel

And so the story continues...
I got my first appointment with maxillo-facial in March 2017. The consultant agreed that there was a problem with the joint and referred me to get a MRI done. The day after seeing him, I was in so much pain that I collapsed in the hallway and was physically sick. My daughter called the doctor out to see me from the local surgery but there wasn't much they could do and just told me to rest. My kids were great looking after me.
I went back to the consultant after the MRI and he told me that it showed the disc was displaced and the joint itself was deteriorating due to excessive wear. He suggested an athrocentesis to wash the joint out. I had this done in September 2017 (the same day my youngest daughter had surgery to remove a unidentified lump on her wrist!). The arthrocentesis wasn't too bad and I recovered very quickly - they basically inject the joint area with fluid and drain it with another needle. Sadly, this didn't do anything to help or improve my opening.
I was given a device called a Therabite at my follow up appointment to use to help exercise and stretch the jaw. Within a few day of using it, my pain was going through the roof so I called the hospital to ask if this was normal and to see if I should just carry on. They suggested taking a break to let the pain settle and then try again but not to stretch too much. In early December I had an extended Trigeminal Neuralgia attack which had me writhing in agony for 3 hours. I had an emergency appointment at the local health centre where I was told there was nothing they could do as I was already on medication (tramadol) which would react with anything they could give me. A week later I went back to speak to a different doctor as the shooting pains were continuing although intermitantly rather than continuously. This doctor prescribed Amitriptyline as the possible interaction risks were quite low. She also prescribed capsaicin cream (chilly cream). The amitriptyline helped me sleep a lot better for the first time in 2 years but didn't do much to stop the nerve pain. After a month, the help getting to sleep wore off but I felt like I was a zombie so I didn't want to increase the dose. The doctor put me on nortriptyline instead. This has kept the nerve pain down a bit better but it hasn't stopped completely. It doesn't help me sleep although I do always feel tired.

After further consultations at the hospital it was suggested that I try some botox injections into the masseter muscles. I did quite a bit of research about this as I had seen comments from people in a support forum saying botox caused bone loss and not to do it. I only found one study that showed this and it was only on 9 women. Further details about the study such as variables in the women's medical histories etc. were not included. Anyway, I finally decided I had nothing to lose as my quality of life was very low already and even a tiny bit of relief was better than nothing. I had the botox 2 1/2 weeks ago and haven't noticed any difference yet. And that's the story to date. I go back to the consultant in September and I'll have to see what is recommended next. A total joint replacement has been discussed as being something that inevitably will have to happen at some point but hopefully there are other options to consider first.

Onto the diary part...
Today, I have been paying the price for doing a few things yesterday. I've been feeling really drained and tired and struggling to motivate myself to do anything much. I did manage to get dressed and go get a takeaway with my daughter for our tea - she'd been out all day and was really hungry and my husband and son had already had dinner early before my husband went out to work. It was a nice treat, although eating naan bread is really difficult for me! I managed a little bit by swollowing small pieces whole after rolling them around my mouth a bit - one of my eating solutions at the moment!
Now it's almost time to face the ordeal of trying to sleep. I try to wait until I'm really tired in the hope it won't take as long - sometimes it works and sometimes I just make myself really sore because I can't stop yawning!
Take care
☺

Introduction

Hi
I've decided to keep a blog to record my journey through dealing with temporal-mandibular joint dysfunction. I hope to to keep a kind of diary of how the day has been, challenges I have come across and how I've dealt with them, new symptoms and recipes suitable for anyone who has reduced jaw mobility and strength.

Firstly, a little bit of history about how my TMJ story began.
My jaw has clicked on and off for as long as I can remember. It became a bit of a family joke when someone heard a loud click and asked "was that your wrist?" and I would laugh and say it was my jaw, it just does that sometimes. Very rarely did it cause any pain and when it did, the pain was minimal and passed very quickly.

The first time any significant happened was in 2001, when my jaw locked open for about an hour after going on The Big One at Blackpool Pleasure beach (too much screaming and laughing!). It was a bit sore and certainly uncomfortable but I just laughed it off and once my joint had relaxed again, in went back into a normal position with no lasting pain.
Skip forward about 8 years and my jaw locked again. This time it was a closed lock and lasted about a month! I had anti-inflammatory pills from the doctor which seemed to eventually do the trick and I carried on as normal afterwards, thinking it was just a thing that might happen occasionally but nothing I needed to worry about.

Then towards the end of October 2015, my jaw started clicking pretty much all the time and the pain wasn't settling down like it normally did. At first I told myself "It'll settle itself down in an hour or so". Then it was by the next morning and then in a few days but it wasn't letting up and I also noticed a feeling of pressure under my right eye and in my right ear. I went to the doctor to get checked out for a sinus or ear infection and mentioned my jaw was also sore. Ad there was nothing wrong with either my eras or sinuses I brought it up with my dentist at my 6 month review. She examined me and said the disc in my jaw joint wasn't moving smoothly with the bone and then "clicked" into place when it got to a certain point. She suggested resting the jaw a bit but doing a few simple exercises she showed me. We also discussed trying a night guard to see if that would help. I said I'd try the exercises first as I didn't like the idea of a lump of plastic in my mouth!
Within 3 months of this new bout of issues, the clicking had stopped but I couldn't open my mouth very easily. We tried a night guard which made the pain worse so I was referred to the Maxillo-facial & Oral Surgery department at the local hospital.

I'll continue the backstory in the next post (as it's already quite long!) and finish up with today's diary entry.

Today started out with me being very tired after another bad night. Not being able to sleep comfortably on either side is taking it's toll. After breakfast and my morning meds I tried to get a bit more sleep and managed about an hour. It gave me just enough energy to finally clean the fridge out while I made some tomato soup my lunch tomorrow (today's lunch was reheated carrot and coriander soup followed with some cherries and strawberries chopped very small with youghurt and agave nectar). I even managed to make dinner for the rest of the family and something different for myself with help from my son. I need help getting things from lower down cupboards as bending down makes me really dizzy. Making dinner took the remainder of my energy for the day and my dizziness was back to full capacity meaning that just turning round a corner in the house has the room spinning! I'm trying out a kind of crab walk when the dizziness is really bad. If nothing else, it's quite amusing watching me walk around sideways! After watching The Mountain Between Us with my daughter ( a great film which I recommend) I had a bath as my hair is a mess and now I'm about to read a chapter of my book before settling down for another marathon session of changing sleeping positions and shuffling pillows around before I eventually get comfortable enough and tired enough to fall asleep for a few hours.

Thank you to anybody reading this - if you are also suffering with TMJD, or have a loved one who is, I hope my little blog will help you. If you have any questions at any time I'll do my best to answer although I am not an expert by any means - I just know how it affects me and some of things that have helped a little.
Take care
😊