Mouth Ulcers

I have a really painful mouth ulcer at the moment that has been bugging me for about four days. I get mouth ulcers on a regular basis but this current one is larger and more troublesome than usual. It is located on the roof of my mouth just above the point where my back molar meet the gum line. 

I couldn't find a good quote about mouth ulcers, I guess it is not a popular topic! So today I have chosen a traditional Scottish saying to illustrate my post: "S mairg a ni tarcuis air biadh", which translates as "he who has contempt for food is a fool". I certainly have contempt for many foods at the moment because my mouth ulcer makes eating a miserable and painful experience. When I have mouth ulcers I find that it is best to avoid foods that aggravate the sores. This means that hot, spicy, salty, sugary and hard foods are off the menu, leaving soft and cold food foods (e.g. yoghurt and soft fruit). Oddly enough, fruit and yoghurt mixed together is sometimes referred to as a fool (e.g. raspberry fool).

Mouth ulcers are a common symptom of some autoimmune conditions, including lupus. Between 40% and 50% of people with lupus frequently experience ulcers in their mouth, nose and/or vagina. The occurrence of ulcers is linked to inflammation and episodes of ulcers can indicate an increase in disease activity (i.e. a flare).

Mouth ulcers in lupus patients can occur anywhere in the mouth but are often found on the roof of the mouth. Some of the literature describes mouth ulcers in lupus as painless; however, a study by Duncan et al (2015) found that only 22% of respondents described their mouth ulcers as painless.

Not all mouth ulcers in lupus patients are caused by their autoimmune disease. Sometimes ulcers occur as a result of injury such as a scald or accidental biting of the tongue or cheek. They can also be caused by hormonal changes, stress, a deficiency of iron or Vitamin B12, or certain medications (e.g. NSAIDs and steroids).

Medications taken to alleviate the symptoms of lupus, such as Prednisone and Hydroxychloroquine, can reduce the severity of ulcers. There are other treatments available, including over-the-counter medicines (e.g. gels and pastilles) and prescription medications (topical steroids).

Personally, I find that the following actions are helpful in dealing with mouth ulcers:

• Good dental hygiene,
• Avoiding trauma to the ulcer (e.g. from certain foods), and
• Application of mouth ulcer gel or glycerin.

I am hoping that a wider range of foods will be back on the menu soon.

It should be noted that if ulcers are particularly bad, or last for a longer time than is usual, it would be wise to seek advice from a GP or health care team.

References:
Durcan R, Fu W, Petri M (2015) Oral Ulcers in Systemic Lupus Erythematosus: Characterization and Clarification of an Important Clinical Manifestation. Arthritis Rheumatol. 2015; 67 (suppl 10).

Food For Thought

Yesterday I made a pot of chilli for dinner. Making dinner is a pretty mundane achievement, but I'm going to own it!

The fact is, I haven't cooked for a few weeks because I have been so ill. My husband doesn't cook - he is actually not bad, he just doesn't enjoy it - and so we have been getting by on supermarket ready meals and what we like to call 'freezer food'. Freezer food is basically a hodge-podge of things found in the freezer (e.g. oven chips, a random pizza, some leftover bolognaise sauce). To be fair, he does make a mean Toad-In-The-Hole and that has become a regular teatime treat.

Before I became ill I would usually make dinner from scratch (with the odd pizza or takeaway thrown in as a treat). I am a good cook and we ate really well. I love to try new things, so we had a really varied diet - everything except fish and seafood because I am allergic. Going from eating good home-cooked food to regularly eating ready meals is quite a difficult transition to make, even though the quality of the food is pretty good. You just can't beat freshly cooked food that is made exactly to your taste.

One of the problems with home-cooking is that you need to be organised, plan what you are going to cook days ahead and buy in the right ingredients. When you are ill, meal planning goes out of the window. Sure, I could send my husband out with a shopping list but he hates spending time in the supermarket and it would be just another chore to add to his ever growing list of things to do. And the question remains, will I be well enough to cook it? The pile of slowly rotting veg in the fridge probably answers that question.

So what happened yesterday? Well, two things......

Firstly, I discovered the joys of on-line grocery shopping. This has been a game-changer! I am able to order the food I want and have it delivered to the house. That means my fruit bowl is full, there is fresh meat and veg in the fridge and there are fewer snack foods lying around! I went a bit wild in the virtual aisles the first time I tried it, but I think I have got the hang of it now.

Why is on-line shopping so important for an AI Warrior?

• I can shop when I feel well enough to do it;
• I can stop and save my 'basket' if I need a break at any point; 
• Having someone else do the physical work of shopping saves me an afternoon in bed recovering from the exertion;
• I can pick a cheap delivery time that suits me (it probably costs less to have the food delivered than driving into town to get it);  
• I am more in control of my diet; and
• I don't have to rely on others to do a chore that used to be mine (I feel like I am contributing).

Secondly, I found a small window of time in which I felt well enough to spend on my feet cooking. I have spoken a little bit about time management before in my blog. It is important for AI Warriors to break tasks down into chunks and take rests in between. Yesterday, I found an hour when my pain levels were low and I had enough energy to stay active and on my feet. I chose to make a chilli because, with enough liquid, it can cook in a casserole dish in the oven for hours on a low heat.

The chilli was a great success! My husband came home and was greeted by the wonderful smell of home-cooking. All he had to do was put some rice on. Meanwhile, I had been able to rest enough to be able to sit and enjoy dinner with him whilst watching a movie. As an added bonus we now have two delicious 'freezer food' ready meals that are home-cooked, healthy and made just the way we like them.

I guess the lesson I have learned is that illness does not necessarily mean that you have to accept change. You do, however, have to learn how to adapt to change.

To pee or not to pee?

This morning I went for yet another scan; this time a CT Scan of my kidneys and urinary tract.

I have been complaining to my doctors about the pain in my left kidney for several years now. The pain is severe - the worst pain I have ever experienced. The pain is usually in my back but sometimes it wraps all the way around to the front, ending up in my lower abdomen. Occasionally the pain will reflect over onto the right kidney. Mostly it is a throbbing background pain, other times it is a sharp stabbing pain that comes and goes in waves. At its worst, the pain will make me scream like a Banshee whilst thrashing about and vomiting.

In addition to the kidney pain I suffer from frequent cystitis-like symptoms (burning pee), proteinuria (protein in my urine), hematuria (blood in my urine) and nocturia (a frequent need to pee during the night). To my mind these symptoms suggest that the whole of my urinary tract is affected.

My kidney pain first began on the 23rd December 2012. I remember this date because I almost spent Christmas day in Edinburgh Royal Infirmary with suspected kidney stones. In the end a scan showed no evidence of kidney stones and I was discharged on Christmas Eve. Since 2012, this same pain has resulted in my being referred to A&E on more occasions than I care to remember. I was hospitalised again in 2014, spending a week on the gynae ward in Barnsley (again a suspected kidney stone or ovarian cyst), but discharged after a scan revealed no obvious cause for the pain.

My doctors have performed numerous scans and tests between 2012 and 2019 but none of these have revealed the cause of the pain or my urinary tract issues. The only clue that I have is that two ultrasound scans (taken in 2016 and 2019) both noted a mass within the lower pole of my left kidney. Since this is where the kidney pain is, it makes sense to assume that this mass is responsible. In 2016 this mass measured 6mm in diameter and was assumed to be a kidney stone. Unfortunately, a subsequent CT Scan of my kidney did not reveal any stones and I was once again discharged from the hospital. Similarly, an X-Ray of my kidney in 2019 did not reveal the presence of any radio-opaque material (i.e. kidney stones).

In my personal (and utterly amateur) opinion, my kidney pain and urinary tract issues are related to my lupus. The symptoms are closely associated with lupus activity (i.e. the more active my autoimmune disease is, the more kidney pain and urinary issues I have). My doctors, however, prefer a diagnosis of kidney stones and have continued to chase this diagnosis for 7 years. If my pain is caused by kidney stones, all I can say is that they must be very sneaky, invisible ones that hide at the first sign of an imaging machine.....

I am hoping that the CT scan carried out this morning will finally reveal what the problem with my kidneys/ urinary tract is. However, because my doctors continue to look for answers that support their kidney stone theory, I suspect that the answers I need will be a long time in coming.

I like the Charlie Chaplin quote that I chose to illustrate this post because it sums up my current dilemma quite nicely. I am certain that my doctors will not find any rainbows (answers) if they keep looking down at the ground.

I am going to wrap up this post with a quote from Albert Einstein, which is equally appropriate:

"Insanity is doing the same thing over and over again and expecting different results"- Albert Einstein.

Flares - The Dark Side of Lupus

I've had a really bad couple of weeks with my autoimmune illness. My pain levels have increased and other symptoms have become more noticeable and bothersome. An increase in autoimmune disease activity is often referred to by AI warriors as a 'flare'.

Flares can last anything from a few days to several months. During a flare an AI warrior may experience a return of symptoms and/or an increase in the severity of symptoms. New symptoms can also materialise during a flare. A flare is often marked by an ongoing fever which is not due to an infection. Other common symptoms include increased painful and swollen joints, fatigue, rashes and sores/ulcers in the mouth or nose.

During a flare I have a constant low-grade fever. Sweat runs from every pore and I cannot cool down no matter what I try. Some things make the situation worse - like taking a cold shower or applying wet towels. My joints swell and hurt more than usual, my rashes get worse and ulcers appear on any part of me that is damp and warm (nose, mouth, ears etc). Tonight I have two ulcers on my tongue and one on the inside of my cheek. My kidney pain escalates during a flare too. Besides the pain, the symptom that affects me most is fatigue. I can sleep for hours at a time, wake up for an hour and then fall asleep again. If I have to be awake, I really struggle to make it through the day.

I am unsure what has caused my disease to flare these last two weeks but I suspect that I may have picked up a bug during one of the hospital appointments I attended recently. In a nutshell, anything that causes stress on the body and its immune system has the potential to trigger a flare. However, everyone's lupus is individual to them and we all react to stress differently. It is important to identify which stressors might bring on flares so that we can learn to avoid situations that may result in a flare. Common flare triggers include: sun exposure, emotional stress, injury or surgery, infection, viruses, over-exertion and changes to medication. Pregnancy is also a stressor and Pregnant AI warriors must take special care throughout their pregnancy.

One symptom that is not often mentioned is the effect a flare has on my emotional state. Over time the physical impacts of a flare take a toll on my mood and my ability to cope with my illness. I am almost certainly in a low or depressed mood and tears will come easily because I am unable to look after myself or occupy myself with things that I normally enjoy. I will often retreat into myself, minimising contact with friends and family. I don't want them to see the lupus troll I have turned into! If you are unlucky enough to be around me, I might lash out in frustration - not physically but verbally. A flare is a very difficult thing to cope with mentally and beyond the usual daily dose of antidepressants (that many of us AI warriors take) the low moods are generally untreated.

If you are looking after somebody with an AI illness, it is important to be especially sensitive during periods of flare. They are low points in the progress of the disease and it can be difficult to see the bigger picture, that the disease is likely to go into remission again. Things that are said during a flare may be an expression of anger and frustration that do not necessarily reflect how the AI warrior truly feels.

Equally, it is important for the AI warrior to recognise a flare and its potential trigger so that they can learn to identify and avoid similar stressors in the future. Don't fight a flare, let it take its course....rest as much as you can and gratefully accept help when it is offered. Try to remember that a flare represents the here and now and not forever.

It is also important to remember that flares can trigger new symptoms. If this occurs, you need to contact your care team (GP, rheumatologist, neurologist etc.) to discuss the progress of your disease and update your care plan and medication.

Finally, flares can result in life-threatening emergency situations. Do not hesitate to seek medical help during a flare if this is required.

Fatigue, Spoons and Insomnia

One of the major symptoms of autoimmune disease is fatigue. Another symptom is insomnia.

Most people have a good understanding of the concept of fatigue. It's that deeply tired feeling that comes on after a long stressful day at work or that bone tiredness you get when after you've been exercising. Fatigue can be a positive thing, it means you have worked hard and are most likely going to have a good night's sleep as a reward.

Fatigue for autoimmune sufferer's is an entirely different experience. It is there all the time, or just under the surface. Sleeping will not cure the fatigue - you go to sleep tired and wake up tired (if you are lucky enough to fall sleep). There is no feeling of 'reward' because the level of activity carried out doesn't warrant the amount of fatigue that is felt.

One of the best ways of explaining the fatigue experienced by autoimmune warriors is Christine Meserandino's 'Spoon Theory'. To learn more about Spoon Theory follow this link:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I can absolutely relate to Spoon Theory and it has definitely helped me to explain to my family and friends how my Lupus affects me.

The best way that I can describe my fatigue is an all-encompassing tiredness. I feel like I have the 'flu everyday. My body is heavy, my mind is dull and I desperately want to sleep. The 'flu feeling gets into my bones and joints too. I get shooting pains down my limbs and the joints in my hands, wrists, elbows, knees, ankles and feet become swollen and ache. My body temperature is also affected, it will swing from feverish sweating to shivering and chilled.

To combat fatigue, I have learned that I need to plan out my days, pace myself and factor in plenty of rest breaks. On regular days I break up my activities into chunks - get myself up and ready, then rest; do some housework then rest etc. etc. If I try to push myself through a day, my disease will flare and punish me for it the next day. If I know that I have a 'big day' coming up I make sure that I am well rested the day before and that my schedule is cleared the the day after. This tactic doesn't always stave off a flare, but it certainly lessens the severity.

Insomnia is another major issue for me. I am frequently awake for a period of over 36 hours. I try to sleep, my body wants to sleep, but it just wont nod off. The idea of suffering from extreme fatigue and insomnia at the same time is a very odd concept. Being awake for extended periods of time can be quite disorientating and it definitely makes my Lupus symptoms worse. At the end of a period of insomnia I will typically sleep for a very long time - anywhere between 12 and 24 hours. I have yet to find a remedy for my insomnia, so if anybody has any tips please let me know....

The fatigue and insomnia that are part and parcel of autoimmune diseases can be hard for people to get their heads around. It can be hurtful to hear people say that you are lazy or need to try harder. The best advice I can give you is to listen to your body and trust your instincts. It is absolutely OK to say no and do what you feel is best for you. The people closest to you will understand and anybody who isn't willing to make an effort to understand your condition probably isn't worth worrying about.

Embracing My Inner Hero

Some days it is really hard to be a Lupus Warrior. I have days when everything becomes too much to handle and there is very little that my body will let me do beyond retreating to bed in a ball of pain. On those days it is easy to become very negative about life - things are never going to get better, my life has changed forever etc etc. Indeed, many people with autoimmune diseases (myself included) suffer from depression. Too add insult to injury it is sometimes hard for the people around us to understand our depression; after all, when they get sick they feel unwell for a few days and then they recover. They can seem unsympathetic or even hostile to our situation.

With any long-term chronic illness it is very important to try to avoid falling into a spiral of depression. This may be easier said than done but it is important to try because mental state has a big influence on the severity of an illness.

I have found that in order to avoid feeling low I need to focus on the positive rather than dwelling on the negative. Rather than mourning those aspects of my life that have been lost to my illness it is more productive for me to consider how my change in circumstances has had a positive influence. Here is an example....

I loved my career as an Environmental Consultant but I had a tendency to take on too much responsibility; I couldn't say no to my clients and colleagues. In order to deliver the workload that I had over-promised I would work long hours and put pressure on the people around me. I was always stressed, even though I didn't always realise it. To make matters worse, I frequently worked on projects that were not popular with the general public and this added another dimension of stress - nobody wants to be the target of abuse. When my illness stopped me from working I found it very hard to adjust at first but gradually I have learned how to say "no". My body simply will not allow me to do all of the things that I would like it to do. I no longer have the huge stresses in my life that came from over-promising and I discovered that nobody thinks any less of me.

I have also learned to congratulate myself for my achievements (however small these might seem). If I have a good day and manage to do some housework and cook a nice evening meal, I allow myself to feel proud of that.

Finding enjoyment in life is just a matter of perspective. This is why Christopher Reeves' quote (see image) really resonates with me. The idea that anybody can be a hero by persevering and overcoming the obstacles in front of them. Lupus warriors overcome the obstacles posed by their illness every day. They endure and persevere despite the pain that ravages their bodies and the endless fatigue.

Don't get me wrong, I'm not a paragon of happiness. I still have days with my Lupus when I curl up in a ball and hide from the world. Those are 'bad days' and they are going to happen. What I don't do is allow the bad days define me. In between those days I'm going to pick myself up, dust myself off and continue to take pleasure in my achievements. I'm going to be my own hero.