Weight

It’s official, losing weight can be hazardous for your health……..

It’s been a while since my last post due to a number of -what I have been calling all year- vomiting attacks. In March I thought they were caused by my pain medication which is why I came off them. Two weeks ago I had the worst attack of the year which lasted 5 days and scared the shit out of me.

I cannot fault the NHS. The locum doctor recommended that I contact the consultant that did my gastric banding surgery. The consultant saw me within 3 days and immediately suspected that I had gallstones. Within 2 days I had an ultrasound scan and confirmation that he was right. He thinks that they have been caused by my “profound” weight loss. I knew this could happen as they remove the gallbladder when they do gastric bypass operations for this reason.

I am so relieved to finally have a diagnosis. The attacks happen when a stone enters the bile ducts trying to get to the intestines. Before I came off my painkillers I didn’t feel a lot of pain during the attacks but I did during the most recent one. This really helped with the diagnosis so I don’t regret coming off my painkillers one bit.

I did mention to my GP back in March that I had discomfort under my ribs on the right hand side but because my CT scan didn’t show anything he dismissed it as IBS. However gallstones only show up on a CT scan if they are calcified. I’m surprised he dismissed it so readily. To be fair though I hadn’t specifically sought help for the attacks. Had I mentioned the two together he would have had the full picture.

So what’s next? I need to have my gallbladder removed asap. Fortunately David has medical insurance through his work so I can get it done privately so it should be in the next few weeks. I’m hoping to have the gastric band removed at the same time. I need to put my health first now. I am not worried about gaining weight afterwards as the band has been deflated for years and not providing any restriction. It does make me eat slower though so I will need to watch this. I will continue to attend Slimming World every week even after I reach my target weight (7.5lbs to go!) and I’m hoping this will be enough to keep me on track.

Autism

Autism and special interests……..

One of the aspects of autism that has characterised my life more than any other is that of special interests. To the neurotypical person these can often be seen as obsessions. As a young teenager these were often associated around people e.g. my history teacher, George Michael and Chris de Burgh. As an adult they have been more focussed around hobbies although a couple of people have crept in.

When in a special interest I find it difficult to think or talk about anything else. This may seem like a bad thing but I have achieved so much because of this. In the space of a couple of years I reached Grade 4 standard on the piano and only stopped because my teacher retired. I taught myself the art of reborning (making realistic baby dolls) and now I am able to sell my creations. My weight loss journey initially began as special interest but has now become a more normal part of my life.

My husband David is the same and we have learned together that we need to make time for our separate interests as they are an integral part of who we are. We have designated our Saturdays as hobby days; David will go off and do his machining and I will either do some reborning or watch documentaries on my current subject of interest which World War II at the moment.

The feelings attached to having a special interest can be really intense and can bring a lot of happiness. I often feel sorry that neurotypical people don’t get to have the same experience. If there is an upside to being on the spectrum then special interests is it.

Mathematics

The Joy of Mathematics……..

I want to try and move on from posting about my health for a while and return to topics that are a bit more cheerful.

I have always been fascinated by numbers and patterns. I can pick out a pattern very quickly and can get very OCD if a perceived pattern is disturbed. I loved mathematics at school and always excelled at the subject. Initially I studied both mathematics and further mathematics at A level but was forced to drop the latter due to the impact of my depression. I think if I’d continued it would have been a tough decision between mathematics and biology as to what to study at university.

Since leaving school I have done several online university level courses in mathematics just for fun. I have been rather neglectful of late but fully intend to get back to it. If I win the lottery I may even do an Open University degree in the subject.

I used to have an obsession with the number 3 after discovering that if the sum of the digits in a number are a multiple of 3 then the whole number is divisible by 3. I used to use a digital clock and the time as starting points to perform calculations involving the number 3 and I would challenge myself to do them before the clock changed. I also used to calculate powers of 3 in my head to ridiculous numbers. Thankfully I managed to stop these activities as they used to prevent me from sleeping.

I also had a fascination with the number pi after finding that the formula for pi was as follows:

Screenshot 2019-04-15 at 14.38.17

I decided to calculate this infinite series by hand to see if I could establish pi myself to set number of decimal points (I can’t remember how many). I spent an entire morning with a calculator and pad of paper. In the end I wrote a computer program to see just how many calculations I would have to do to achieve my aim. I worked out that if I did one calculation every 10 seconds it would have have taken me 212 years. Needless to say I gave up.

I think the reason I love numbers is that they are objective; there is a definite right and wrong and they’re the same everywhere regardless of where you are in the universe. In a world where I often struggle to make sense of things, mathematics is a constant friend.

Uncategorized

The final step……..

This is just a quick update. Today is day 15 free of opiate painkillers. All of the acute symptoms of withdrawal are now gone. I now only have a feeling of exhaustion and low mood. This part is more difficult to deal with as there is no definite timeline; it could last a few weeks to several months. It is very variable though and I have short periods where I feel a bit better.

I spoke to my doctor this morning and told him what I’d achieved and he was really pleased about my progress. I have been referred to a pain psychologist who will help me cope with my pain levels in a different way without medication. I also took my stash of meds to the pharmacy for disposal. I was never in any danger of relapsing but the act of disposal felt huge nonetheless.

So now I look to the future…

Fibromyalgia

The end of ‘rehab’ and looking forward…….

Today is day eight of my opiate withdrawal and I am proud to announce that I have made it. Many of the horrendous symptoms have now abated and I am feeling clearer headed already. I am however left with some nausea and insomnia -sleeping four hours at night. One of the more weird effects is my mood. I didn’t realise that opiate painkillers act on the brain in the same way as the neurotransmitter dopamine. Long term use of opiates causes the brain to make less dopamine as they are so much stronger. This means that at the moment the dopamine levels in my brain are below normal and this has resulted in my mood being very flat. I’m neither happy or sad, I just don’t feel anything. It’s worse first thing in the morning and I seem to feel a bit better as the day goes on. Fortunately my levels of dopamine should return to normal within about four months. For the first time I can definitely say and name what is wrong with my faulty brain!

Anyway on to the future. Now that I feel I have taken charge of my body I am feeling really optimistic even though my pain levels are quite high. Having a logistical, scientific mind is probably a hindrance to me here. I know a lot of people find that holistic therapies are of benefit in the treatment of chronic pain. I have tried acupuncture before but didn’t find it helpful . I do however find the relaxation part of yoga works well, especially after the workout. Some of the yoga chants seem a bit weird to me but they do focus the mind and the resonation in the chest feels good.

I am going to get a monthly pass to the local health spa so I can use their pool and jacuzzi as many times as I want. I wish we had room for a hot tub at home as I know it would be a great help to me. I remember the comedian, Jasper Carrott saying that all you needed at home was hot bath and a curry!

If I ever get well enough to work again I think I’d like to work as a teaching assistant. All the joys of working with the children without the red tape of being a teacher. With my musical ability I think I could really help to bring joy to a school. When I was at primary school we had a headteacher who was really musical and the concerts we put on were amazing. I’ve never seen anything like it since in any primary school. I must brush up on my guitar skills.

Fibromyalgia

Going cold turkey……..

Having made the decision to come off my opiate painkillers I did some research of clinical studies about how best to achieve my aim. The less traumatic route of gradually titrating my doses down over a period of a couple of months was an option but having to cope with further intestinal issues and bouts of vomiting for another eight weeks wasn’t appealing. Going ‘cold turkey’ as they say wasn’t very appealing either but it meant that I could be free in a mere eight days.

The two opiates that I had to stop were sustained release tramadol and high dose short acting codeine. My final dose of tramadol was taken on the morning of March 23rd and my final dose of codeine was taken at 10:30pm on March 24th. Below is a diagram showing the timescale of opiate withdrawal.

opiate-withdrawal-timeline

I had intended to record my thoughts and feelings over the days of the withdrawal process but the first two days were so difficult I couldn’t even begin to describe how I felt. It is only now on day four that I have regained my ability to think.

I have passed the peak of the withdrawal process and I am on the path to normality albeit with a huge increase in my fibromyalgia pain which was to be expected. I haven’t been able to do my daily walk as I’ve needed to remain close to the loo all week but I have been doing some yoga stretches to try to alleviate some of the pain. I’ve also been trying relaxation while listening to music and that has helped a bit too.

I now feel like I’ve stopped being a ‘sick person’ and I’m finally taking charge of my condition. I am hoping to rehabilitate my muscles with gentle exercise. I don’t think I will ever be pain free but if I can improve my muscle function it will be of benefit to me.

I wouldn’t recommend anyone reading this post to stop taking any prescribed medication without first consulting a medical professional. I saw a gastrointestinal consultant who recommended coming off my painkillers before I did this. I also consulted a pharmacist this week when things got really tough. This course of action was the right one for me and I certainly do not judge any fibromyalgia sufferer that requires strong painkillers to manage their symptoms. I just couldn’t deal with the bowel dysfunction anymore.

Needless to say I have now have tremendous sympathy for all drug addicts. What I’ve been through this week must pale into insignificance to what they must have to go through to get clean.

Fibromyalgia

The Reckoning……..

Although this is going to be a slightly embarrassing post I’m going to share what’s happened to me in the hopes that it may help others to not reach the extreme situation that I’m finding myself in.

When I was diagnosed with fibromyalgia back in 2007 I was put on a cocktail of painkillers. Most of them were opioid based. As well as producing dependency they have the side effect of causing severe constipation. I have been managing this with various over the counter medications and in the past six months prescription strength osmotic laxatives.

It seems the bouts of vomiting I’ve been having all year have been the result of severe constipation and not gastroenteritis. I had an attack yesterday afternoon which I was able to stop with an anti-emetic. Coincidentally I saw my gastric banding consultant yesterday and was shown my CT scan from just before Christmas. The band hasn’t been doing its job for years because it has slipped out of position but what was alarming for me was the shape of my colon. It has become so distended I’m surprised I haven’t had more symptoms.

Enough is enough, with my family history I have to do something as chronic constipation can increase the risk of colorectal cancer. It is now obvious to me that I have to come off all of my opioid painkillers and manage my pain through other means. My consultant said that I can be referred to a pain psychologist for help with this.

I have come off sustained release oxycodone before and I managed the symptoms of withdrawal quite well but I haven’t been free of all painkillers in over a decade and I’m terrified about how bad it’s going to be. Other people see me as a strong person but I’m not. I’ve no idea if I can do this but I have to try.