Tuesday, 18 July 2017

Chronically Painful: 10 Things You Should Know About My Pain


1. Pain, whether it's chronic or acute, is a personal, subjective experience. Everyone experiences pain differently. I find it difficult to answer the question: "How bad is your pain on a scale of one to ten?" Someone's number 6 may feel like someone's else's number 8. Many of us have seen the look of disbelief on our doctor's faces from time-to-time, when they think we're exaggerating our pain score for attention or to get pain meds.



Revised Pain Scale by Hyperbole and a Half 


2. My chronic pain is exactly what it is: chronic. However, some days it's more bearable; other days, I can't move without feeling like I'm being stabbed repeatedly with a blunt knife as I lay stiffened with agony in bed. We cannot predict when good or bad days may occur. So please don't be offended if I have to cancel our plans. When I'm having a "good" pain day, I will show up and be there, I promise.

3. When the pain is overwhelming, it's difficult for me to communicate or concentrate on conversations. I will forget what you've just said, or I will struggle to string a sentence together. The pain is distracting. Often, I will only reply with one word answers, or I will simply be unable to respond to you at all, with emails/texts/messages/calls going unanswered for a while. Please don't think that I'm being anti-social, or rude. When the pain is more bearable, I'll be more communicative.

4. My pain makes me short-tempered, impatient and irritable. On my worst days, it makes me really bitchy. Unfortunately, this has cost me some friends. When I'm like this, it is best not to engage with me. I'm best left alone until the pain eases or until I'm feeling less bitchy.

5. My pain can be debilitating and I'm often stuck indoors, in bed or on the couch. I may also struggle to climb the stairs, walk or move without your help. During these times, I need help from other people. I hate being dependent on others and so, I may try to push helpers away; I don't like being seen as weak, dependent and burdensome. It takes a lot of strength to swallow my pride and let people help me.

6. When my pain is at its worst, my senses are overstimulated: daylight streaming in through a crack in the curtains, the sound of a boiling kettle, a bite of food, or the smell of cleaning products becomes unbearable. Regardless of my pain levels, I am chronically light-sensitive and need to keep the curtains shut during the day. My neighbours probably think that I'm growing a pot farm inside...or that I'm a vampire.





7. If you ask how I am doing, I may answer with "I'm fine!" when I'm not really, or I may be brutally honest and tell you that I'm feeling like shit. Please don't be offended by my honesty. My pain is what it is.

8. If my pain requires me to seek medical assistance (e.g. breakthrough pain), I'm likely to be treated as a drug-abuser and given lifestyle advice, rather than the pain relief I need. Then there's the frequent lectures from pharmacists about the dangers of taking pain meds long-term. Also, don't expect me to be impressed if you say things like "Are you sure you need those meds? Can't you do yoga or something instead?" Just don't go there.

9. Chronic pain is isolating. It is poorly understood in the medical community and it's difficult to measure, as pain is a subjective. I can't expect you to understand my pain unless you step into my shoes. I can't expect anyone to understand my pain, because we all experience pain differently. The pain may take away our social lives, employment, studies, hobbies and anything else that involves people contact. Not being able to go about our everyday lives may isolate us from society.

10. It is the little things you do that are actually a big deal for me. Even little things, like bringing me a cup of coffee or fetching my blanket or taking me grocery shopping etc, will make a huge difference to me. When the pain is severe, I may find it difficult to express my gratitude. But please know that I am grateful for everything that you do for me. It means more to me than you'll ever know. Thank you.




Wednesday, 12 July 2017

Lupus and Anaemia



Last year, I was diagnosed with severe iron deficiency anaemia. It crept up on me slowly and quietly at first, and I slowly became even more tired than usual, short of breath, light-headed, dizzy and faint. I soon began to suffer with fierce palpitations that were sometimes so severe I thought I was going to die. I looked like a vampire movie damsel in distress: pale, drawn, half-dead and listless. All I did was sleep. Blood tests showed that I had anaemia of chronic disease (see below). I was put on strong iron pills, but as they did not work at first, my haemoglobin levels kept falling and I nearly needed blood transfusions.

I was sent for various tests: endoscopy, colonoscopy and ultrasounds. The tests revealed gastritis, a hiatus hernia and gallstones, but nothing that explained the anaemia. If I wasn't at a medical appointment, I was asleep in bed, too exhausted to lift my head some days. Eventually, the iron pills did start to work and my haemoglobin levels stopped falling, and for a while, I felt better. But recently, the beast started creeping up on me again. So the whole exhausting process of tests, medical appointments and seeing specialists begins again. I'm absolutely thrilled by this...NOT!    




What is Anaemia?


Anaemia is a very common illness, affecting both lupies and non-lupies. It affects half of all patients with active lupus. Dr Michael Rosove, speaking to the LFA says that "anemia means too little haemoglobin. Haemoglobin is the protein inside red cells that carries oxygen from the lungs to all the tissues of the body."
Anemia is a condition in which a person has a lower than normal number of red blood cells or the amount of hemoglobin in the red blood cells drops below normal, which prevents the body’s cells from getting enough oxygen1.

Symptoms of Anaemia


Symptoms include fatigue, palpitations, breathlessness, dizziness, fainting, pale skin, headaches and rarer symptoms such as tinnitus, sore tongue, itching, spoon-shaped nails, pica and ulcers2. Frustratingly, many of those symptoms are the same as those in lupus, so it may take a while before the anaemia is diagnosed.


Causes of Anaemia in Lupus Patients


There are several causes of anaemia in lupus patients:
  • Inflammation
  • Inadequate erythropoietin, a hormone produced by the kidneys, that stimulates the marrow to make more red cells
  • Iron deficiency: Iron is necessary for the production of hemoglobin. Iron (as part of the protein hemoglobin) carries oxygen from the lungs throughout the body. Iron deficiency also may result from menstrual bleeding or from intestinal bleeding due to non-steroidal anti-inflammatory drugs.
  • Loss of bone marrow caused by certain drugs used to treat lupus (such as azathioprine or cyclophosphamide)


How is Anaemia Diagnosed?


A complete blood count (CBC) is used to check for anaemia; plus your doctor may order the following blood tests:

  • Haemoglobin levels 
  • Red blood cell count (RBC) 
  • Reticulocyte count
  • Serum ferritin level
  • Serum iron level


Anaemia of Chronic Disease (ACD)


This is an anaemia that occurs with chronic illnesses, inflammatory disorders, cancer, infections and other illnesses. "Inflammatory and chronic diseases interfere with the body's ability to use stored iron and absorb iron from the diet."2


Anemia of inflammation and chronic disease is caused by red blood cells not functioning normally, so they cannot absorb and use iron efficiently. In addition, the body cannot respond normally to erythropoietin (EPO), a hormone made by the kidneys that stimulates bone marrow to produce red blood cells. Over time, this abnormal functioning causes a lower than normal number of red blood cells in the body. Some of the chronic diseases that lead to ACD include infectious and inflammatory diseases, kidney disease, and cancer. Certain treatments for chronic diseases may also impair red blood cell production and contribute to ACD.3

People with lupus and similar illnesses are often diagnosed with "anemia of chronic disease", if all other causes (e.g. poor nutrition, gastrointestinal bleeding etc) of the anaemia has been ruled out. This type of anemia develops slowly. Doctors treat the illness by dealing with the underlying disorder (e.g. lupus, rheumatoid arthritis, infections etc). If the disorder doesn't respond to treatment, drugs that stimulate the bone marrow to produce red blood cells may be given. If the anaemia becomes severe, blood transfusions may be recommended.4

 


Treatment of Anaemia


Depending on the severity, cause and type of the anaemia, treatments may involve dietary changes, iron supplements, iron injections, B12 supplementation, folic acid, erythropoietin injections and in some cases, blood transfusions. Bupa says that "Your GP or specialist will always treat the underlying cause of your anaemia [such as lupus] before considering a blood transfusion."

________________________________________________________________________

Sources:

1. https://www.niddk.nih.gov/health-information/blood-diseases/anemia-inflammation-chronic-disease
2. https://www.niddk.nih.gov/health-information/blood-diseases/anemia-inflammation-chronic-disease
3.https://www.niddk.nih.gov/health-information/blood-diseases/anemia-inflammation-chronic-disease
4. 
http://www.merckmanuals.com/home/blood-disorders/anemia/anemia-of-chronic-disease


Thursday, 15 June 2017

Lupus and Managing Stress



Dealing with a chronic illness like lupus is stressful. Not only do you have to deal with debilitating symptoms and chronic pain, you also have to cope with medication side effects, medical appointments and diagnostic tests, employment troubles, difficulties in obtaining welfare, dealing with loved ones who don't understand, ignorant attitudes from society, and so on. Living with a chronic illness is a full-time job and it requires constant management.


Stress aggravates our illnesses, which adds more stress to the pile; leading to a vicious cycle of stress and illness. Dr Chris Iliades, MD, writing for Everyday Health says: ""A chronic disease like lupus, with symptoms of being tired and feeling ill, causes stress that signals your immune system to activate and causes inflammation. This can become a vicious cycle in autoimmune disease." 


Lupus UK adds: "Many studies have suggested that lupus can flare during times of stress. This has been shown to occur with major stressful events as well as with regular stress...Certain lupus symptoms, such as having difficulty with memory, have been associated with increased amounts of stress...People who have lupus and experience stress can develop increased flares of their lupus." 

Managing stress should therefore be an important part of managing your illness. There are many ways to help combat stress. Here are some suggestions:

Meditation and deep relaxation techniques:


Many people recommend meditation and deep relaxation techniques, because they are thought to help you focus on the present (mindfulness), calm anxious thoughts and control negative thinking, and help you manage stress, which may help you reduce flares and have beneficial effects on the body as a whole.


You can find lots of free online guided meditations here:

Guided meditations from Fragrant Heart:
http://www.fragrantheart.com/cms/free-audio-meditations

A free seven-lesson course in meditation:
http://learnmeditationonline.org/elearning/course/index

Free meditation experiences for adults and children:
http://www.freemeditation.com/online-meditation/

Guided meditations from Magical Living:
http://www.magical-living.com/guided_meditation.html

Free Guided Meditations from UCLA Mindfulness Awareness Research Center:
http://marc.ucla.edu/body.cfm?id=22b)



 

Write a daily journal:


Help Guide says that "A stress journal can help you identify the regular stressors in your life and the way you deal with them. Each time you feel stressed, keep track of it in your journal. As you keep a daily log, you will begin to see patterns and common themes."


Stress management techniques:


From www.helpguide.com:

  • Learn how to say “no”. Know your limits and stick to them...taking on more than you can handle is a surefire recipe for stress.
  • Avoid people who stress you out – If someone consistently causes stress in your life, limit the amount of time you spend with that person or end the relationship entirely.
  • Take control of your environment. If the evening news makes you anxious, turn the TV off. If traffic’s got you tense, take a longer but less-traveled route. If going to the market is an unpleasant chore, do your grocery shopping online.
  • Pare down your to-do list. If you’ve got too much on your plate, distinguish between the “shoulds” and the “musts.” Drop tasks that aren’t truly necessary to the bottom of the list or eliminate them entirely.
  • Express your feelings instead of bottling them up. If something or someone is bothering you, communicate your concerns in an open and respectful way. If you don’t voice your feelings, resentment will build and the situation will likely remain the same.
  • Adjust your standards. Perfectionism is a major source of avoidable stress. Set reasonable standards for yourself and others, and learn to be okay with “good enough.”
  • Don’t try to control the uncontrollable. Many things in life are beyond our control— particularly the behavior of other people. Rather than stressing out over them, focus on the things you can control such as the way you choose to react to problems.
  • Do something you enjoy every day. Make time for leisure activities that bring you joy.
  • Keep your sense of humor. This includes the ability to laugh at yourself. The act of laughing helps your body fight stress.


Cognitive behavioural therapy (CBT)


CBT is also recommended by some experts. Lupus UK says: "A study in 2010 taught a group of lupus patients how to handle stress using cognitive behavioural therapy (CBT). They found that the group of patients who learned appropriate ways of dealing with stress ended up with decreased depression, anxiety, daily stress, and symptoms such as pain. They also had an overall better quality of life compared to the lupus patients who did not learn how to deal with stress." 

If you want to try CBT, ask your GP if you can get a referral to a CBT practitioner. Please be aware that there is a long waiting list on the NHS here in the UK. Private options are available, though they are costly. However, there are numerous books, ebooks, podcasts, audiobooks, appsonline self-help, YouTube videos and other internet resources offering CBT exercises, which may help.

Meeting people


I'm not exaggerating when I say that networking with others going through the same thing has changed my life. Arthritis Research UK says: "Lupus is a difficult condition to live with and throws up many challenges. Meeting others with lupus doesn't necessarily remove these challenges but it can help you to cope with them by sharing your thoughts and concerns with someone who understands." 

Before I reached out to others, I was alone, isolated and angry, and I was dealing with my illness in negative ways that were detrimental to my health - binge drinking and smoking - which I stopped soon after joining online support groups. I have connected with thousands of people all over the world and have made many lifelong friends. My illness has taken away so much, but I have gained an inspirational family of the most caring, kind, and understanding people I have ever met. 


Creative Therapies


As a creative person, I mainly use creative art therapies to help me cope with chronic illness and stress. Many of my friends who have a chronic and/or mental illness find that adult colouring books help them cope with stress, anxiety and pain. I like colouring too - I find that it is a wonderful method of distraction.

Expressing myself through art allows me to take back some control over my life and not let chronic illness dominate who I am. It is an act of defiance, a rebellion against the illness which has taken so much from me. When I create something, I am saying "This is me. This is what I can do. The illness is not who I am." The illness cannot take away what I create. Art allows me to take back my identity, which the illness is always trying to steal.


Sometimes, I don't have the words to describe what I am feeling inside; so I paint what I am feeling instead, throwing all my anger, frustration and sadness onto the canvas in explosions of paint. It is liberating and enables me to find new meaning in my life with chronic illness. Psychology Today explains that art therapy: "...is a form of “meaning making” that can be ultimately helpful in an individual’s adjustment and acceptance of serious or life-threatening conditions."

You don't have to be 'good at art' to be creative. No-one is judging your work and no-one will sneer at your work (if they do, just tip a bucket of paint all over them!). There are countless ways of expressing yourself, through painting, drawing, crafting, baking, music, writing, sculpture, digital art, film-making, or photography, and so much more. Use whatever method makes sense to you and don't be afraid to try out new things. Choose whatever appeals to you the most.  

If creative therapy is your thing, try out this excellent website, which has 100 ideas to get you started:

Expressive Art Inspirations: 100 Art Therapy Exercises

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I know that the various methods of stress management listed above may be easier said than done to utilise, but I hope you can find something that works for you. The most important thing to remember is that everyone is different, and what works for someone else may not work for you. The best thing to is try out different things until you find something that works for you.

If you have any tips you'd like to share, or if you wish to share your experiences, please add a comment below. I'm very keen to hear about what works for you in your own battles with chronic illness and stress. Thank you!

With love,

Atlanta x

Monday, 8 May 2017

Flare Ups: The Lupus Firestorm


Despite our best efforts to keep the lupus monster at bay, and through no fault of our own, our immune systems will rebel and we will suffer with flare ups.  

During a flare up, I suffer with extreme joint and muscle pain, low-grade fever, swollen joints, violent migraines, severe fatigue, depression and anxiety. Additionally, I may suffer with weakness in my legs, muscle cramps, rashes, ulcers, protein in my urine, sweats, cognitive dysfunction, and my cheeks will light up with a burning, raised, red rash (the butterfly rash). It makes me feel pretty miserable, especially with the excruciating pain in my knee joints, which makes me feel like I've been knee-capped. The overwhelming fatigue of the flare up keeps me in bed for days. The pain keeps me awake, so despite the exhaustion and bed rest, I barely sleep. 

It is worth pointing out that compared to others, my flare ups are mild; many of my lupus friends suffer with severe organ damage and other life-threatening flare up complications. Some of my friends have died from flare ups. I do not wish to be alarmist, but the reality for many with lupus isn't pretty and I don't want to give the wrong impression that lupus is a mild disease. I say this because some lupus websites downplay the seriousness of lupus to avoid causing distress. 


http://www.specialistforum.co.za/sle-pain-management/So what exactly is a 'flare up?' 


A flare up can be defined as the "worsening of lupus symptoms over a time period". Flare ups are unpredictable and may last from anything from a few days to several years. Flare ups vary from mild to moderate, to severe and life-threatening. Each flare up is different and it is hard to predict their course. During flare ups, you may suffer with similar symptoms to those of previous flare ups, or there may be new symptoms and different variations of symptoms each time. Some of the most common symptoms of flare ups may include new or worsening:


  • Joint and muscle pain
  • Swelling of joints and other body tissue
  • Hair loss
  • Oral and/or nasal ulcers
  • Skin rashes, especially the malar 'butterfly' rash
  • Extreme fatigue
  • Lupus Arthritis 
  • Chest pain
  • Fevers
  • Neurological issues
  • Swollen glands
  • Depression
  • High blood pressure
  • Organ problems
  • Sun sensitivity
  • Migraines

What causes flare ups?


It is not known what exactly causes lupus itself, but it is thought to be caused by a combination of genetic and environmental factors. However, we do know about some of the things that can trigger a flare up. 
There are many possible triggers for flare ups as every lupus patient is different, but some of the most common triggers have been identified as (per the Lupus Foundation of America)*: 

  • ultraviolet rays from the sun
  • ultraviolet rays from fluorescent light bulbs
  • sulfa drugs, which make a person more sensitive to the sun, such as: Bactrim® and Septra® (trimethoprim-sulfamethoxazole); sulfisoxazole (Gantrisin®); tolbutamide (Orinase®); sulfasalazine (Azulfidine®); diuretics
  • sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
  • penicillin or other antibiotic drugs such as: amoxicillin (Amoxil®); ampicillin (Ampicillin Sodium ADD-Vantage®); cloxacillin (Cloxapen®)
  • an infection
  • a cold or a viral illness
  • exhaustion
  • an injury
  • emotional stress, such as a divorce, illness, death in the family, or other life complications
  • anything that causes stress to the body, such as surgery, physical harm, pregnancy, or giving birth

Flare ups vary from mild to moderate, to severe and life-threatening. Each flare up is different and it is hard to predict their course. Remember that lupus can affect almost any area of your body. It is important to report any new symptoms to your lupus doctor so you can get treated for your lupus flare quickly.

Another thing to remember is that every lupus patient is different and likewise, every lupus patient will have different symptoms and triggers. It is not possible to predict when flare ups will occur, and how long they will last. Some people may get frequent flare ups, others may have fewer but longer flare ups; or some may have long remission periods with very few flare ups in their life time. But as the rule of thumb goes, every lupus patient is different, and so flare ups vary depending on each patient. 

However, it may be possible to spot early warning signs that can lead to a flare. Everyday Health says:
If you have lupus you should be aware of the signs or symptoms that can indicate when a flare may be starting. Some common warnings of a flare are:
  • Becoming overtired or feeling as though your stress level is building up.
  • Having more frequent or higher fevers than usual.
  • Aching in your muscles, or more painful and swollen joints.
  • The development of a rash.
  • The development of any symptoms you have not had before.

If you spot these early warning signs, try to take steps to alleviate some of the signs e.g. if you're feeling more tired than usual, take more rest, or if your stress levels are building up, take some time to relax until the stress passes. While we cannot prevent flares, we can take steps to reduce it's impact (though this is easier said than done!). It would also be a good idea to inform your healthcare provider so that they can monitor your symptoms and and take any relevant action that is required.

Depending on the severity of the flare up and how it affects you, the treatments used may vary in options and dosage. For example, a flare up may be treated by increasing the dosage of steroids you're currently taking, or it may require more drastic options like IV steroids. Everyone is different and as every flare up is different, the doctor will tailor the appropriate treatment to your needs.

Typical medications used for lupus include steroids, NSAIDs, immune suppression, biologics or anti-malarials. The doctor may choose one, or a combination of several medications to treat your flare up. 
There are also self-help recommendations which may help reduce the frequency or severity of flare ups. But again, please remember that every lupus patient is different, and what works for one, may not work for another, and vice versa. 


Molly's Fund Fighting Lupus say that "It is important to report any of these with your medical caregiver as soon as possible so that they can quickly assess and treat any symptoms that could signal a flare. Keeping a daily symptom journal can be a helpful tool." Molly's Fund Fighting Lupus also adds that "If you suspect that you are having a flare, please contact your physician immediately so that any adjustments to your treatment plan and medications can be made."


A Note About Sunlight


UV light, such as from the sun, or sunbeds, are known to trigger flare ups of lupus in many patients. Arthritis Research UK have the following recommendations for protecting yourself from sunlight: 

Keep out of the midday sun and wear a hat.

Cover your skin [with protective clothing e.g. long sleeves etc] or use a sun-blocking cream, SPF 50 or greater. This is available on prescription for people with lupus. You can also buy tinted high-factor sun creams that can be used as foundation make-up. 

Avoid sitting under sun umbrellas on a paved area because the sunlight will be reflected onto your face.



A Note About Stress


Science Daily report that daily stress "is very common in patients suffering from lupus. Apart from the usual circumstances which produce anxiety in a healthy population, other effects include knowing that your body suffers from a chronic disease which is controllable but incurable and of uncertain prognosis that requires chronic treatment (in some cases for the rest of their life) and which have important secondary effects". Treating daily stress, "together with the usual pharmacological treatment, is a useful weapon when treating patients suffering from lupus" *** 







Friday, 21 April 2017

Coping With Chronic Illness and Depression


Depression is not simply about feeling sad. Everyone feels sad at times. The darkness comes out of nowhere, a wave of fierce and thunderous depression that sweeps over me like a tidal wave. All there is pure, raw emotion; primal rage, which surrounds me in a bubble of despair. I do not want to leave the sanctuary of my bedroom, I do not want to become part of the frightening world outside. Such is my state of mind when I get like this. I can't just pull myself together.

Depression can hit anyone; it does not discriminate. Depression happens. But having depression is nothing to be ashamed of and it has nothing to do with strength or will. It is a real illness, as real as diabetes or lupus; it is thought to be caused by a chemical imbalance in the brain. Depression can occur entirely on it's own, or co-morbid with other mental illnesses.


Depression occurs in many chronic illnesses, either as a response to dealing with a chronic illness (reactive depression) or as a symptom of the chronic illness, or is a separate condition that occurs alongside your physical illness. I have suffered with anxiety and depression for as long as I've had lupus and all my other ailments. Much of it occurs in response to being bedridden, isolated, housebound, in pain and unable to do much for myself, as well as constantly fighting doctors and other people's attitudes to my illness.


Dealing with chronic illness and your feelings is a ongoing process of constant change and healing. Everyday is different; we get both good and bad days. We must acknowledge both good and bad days, otherwise we will beat ourselves up for having a bad day. It is not our fault if we have a bad day. We are already in enough pain, so instead of beating ourselves up on bad days, we must be kind to ourselves (though this is easier said than done!)

Depression can easily creep up on a person, no matter who you are or what illness you have. Having depression is nothing to be ashamed of and is nothing to do with emotional strength or will. Depression happens. It can happen to anyone and it does not discriminate, exactly the same as chronic illness. I have compiled a list of ideas that may be useful to you in your mental and physical well-being:

Build a support network and surround yourself with supportive people

 

A while ago, I felt like I was the only person with lupus on the planet. I did not know anyone else with lupus and did not know how to reach out to others. It was a very lonely existence. A few years ago - thanks to the growth of social networking - I started reaching out to others on social networks. I do not feel lonely anymore, despite often being too unwell to leave the house. I talk to friends all over the world, and these friends know exactly what I'm going through. No matter what time it is, there is always someone out there I can reach out to. I started making friends with others lupies and I have made friends with the most incredible people I have ever been blessed to know. They are my inspiration, they are my motivation and they are like family to me. Reaching out to others has been life-changing; it has saved my life. 

Dealing with negative attitudes and comments


Unfortunately, this is a horrible fact of life: that wherever we go, whoever we are, we will encounter ignorance and prejudice. The sort of comments that have upset me in the past include:

  • "Others have it worse than you, so just suck it up
  • It’s all in your head, because I don't see anything wrong with you
  • You don’t look sick...aren't sick people meant to be in a wheelchair or something?
  • You just need to think positive, it's just mind over matter.
  • Pull yourself together and just get on with it, push yourself.
  • Get a backbone"

It is best to ignore such comments, I am often told, but that is easier said than done. These comments, whether they were innocent or malicious, hurt. Words are powerful weapons; they can tear people down or build them up. I typically respond by subjecting the negative person to an education about lupus. If educating them does not work, or they simply don't care, it is time to move on. Some people's opinions are set in concrete, no matter what you tell them. 

Share your feelings


You’ve probably heard this a million times before, but there’s a lot of truth to this. We all have feelings, whether we ignore them or not. We’re only human and it is our right to voice how you feel about your condition. Holding our feelings in is harmful; you will feel like a pressure pot, building up with these concealed feelings until you explode into a million pieces. There are many ways of sharing your feelings: keeping a journal or blog, screaming, beating up a pillow (if you have the energy), talking to understanding friends, joining social network groups and pages where you can share your feelings, or seek a counsellor. Personally, I find writing a blog and sharing my feelings with understanding people helps me the most, but everyone is different. You could try out many ways of sharing your feelings before finding the one that makes you feel comfortable.

Educate yourself


Knowledge is power. Learning about lupus and my other conditions has made a huge difference; the knowledge I have gained has empowered me to take a more proactive role in my healthcare, find out about other treatment options and helped me understand what is happening to my body. I panic a lot less when I get sick and I am learning when best to seek medical help. It has helped me to accept my illness and more poignantly, I am able to help others going through the same thing as me. The more I have learned, the better and stronger I feel. Reading up on a condition or a symptom is a tool through which I can combat ignorance, fear and worry.

Most charities that deal with your particular condition will have a list of recommended resources for you on their websites, which will include books, leaflets, information packs for yourself and your doctor, other websites, journals and awareness materials. Please be careful when researching your condition on the Internet and ensure that they come from recognised sources or authorities on your condition. Anyone can publish what they like on the Internet and it is important to separate fact from fiction. Again, the charities will be able to point you in the right direction. 


Express yourself creatively


Not all of us are creative, so this tip might not be useful for everyone. Personally, I have found expressing myself creatively an effective way of dealing with my feelings. I express all my rage, anger, fears, despair and helplessness in my paintings, drawings, blog, creative writing and crafts. Being creative helps me vocalise my feelings and put a name to the emotions I am feeling. It helps me untangle the chaos in my mind, pull out the fears and worries and transfer them to paper. Getting wrapped up in creative work takes my mind off things and for a temporary time, I am able to forget my illness and everything else that is going on.

I have spoken to many chronically ill people over the years who have found creativity a helpful, even essential, tool to promoting their mental and physical well-being. There are many ways to be creative and myself and other chronic illness warriors have tried painting and other fine arts, arts and crafts (collage, making gifts, scrapbooking, pottery etc), writing a blog or personal journal, textiles activities (knitting, sewing, crocheting, cross stitch, making cushions etc), running a website or online support group, creative writing (poems, short stories etc), computer animation (my favourite!), singing and playing an instrument etc. There are many things that you can do. It depends on your pain levels, your mobility and your personal preferences.


If you are unsure of where to start, here is a link to an article called '100 Art Therapy Exercises.'

 

Raise awareness


One thing that could help is taking steps, no matter how large or small, to raise awareness of your condition. Raising awareness gives me a sense of purpose and makes me feel like I have more power in my life. It also has the same effect on my well-being as reading up on my conditions. Good places to start are on social networks and with the relevant charities (who will point you in the right direction).

We can be our own worst enemies sometimes and I can relate to this through personal experience. I often beat myself up emotionally, thinking that I am a failure, or weak etc. I used to blame myself for getting sick. We must not blame ourselves, because it is not our fault. We need to be kind to ourselves and show our body and mind the love we would give a child. This is the only body and mind we have and regardless of the damage our illnesses are doing to our bodies, we need to be kind to ourselves and treat our bodies and minds with love. Human beings are fragile, so we must be gentle with ourselves. 

A few tips for being nice to yourself:


Pamper yourself and treat your body e.g. face-masks, body scrubs, a long soak in a bubble bath etc.

Treat yourself to your favourite treats. A little self-indulgence is good for us.

Eat healthily: this doesn't mean go on an extreme diet, it just means nourishing your body and showing it some love. Do some research into a healthy diet and focus on increasing the amounts of fruit, veg, wholegrains, anti-inflammatory foods, antioxidants and stuff like that. You must not deprive yourself of treats. We still need to enjoy ourselves and we’re more likely sustain a healthy diet for longer if we still allow ourselves treats. 

Harsh, faddy diets are harmful to your body, so don't go there with those.

Read a good book, or watch a funny movie and chill out in your PJs.

Take the time to have 'you time', where you come offline, turn away from all distractions and do things that you want to do. I find having 'me time' is essential for my sanity. A little quiet time can do us all good.

For more pampering tips, click on this link '10 Affordable Ways to Pamper Yourself'.

 

Take up a hobby if possible


Depending on your physical ability, energy levels, time and other factors, there is something for everyone. I don’t get out much, but I’ve got a few hobbies at home such as painting, arts and crafts, running an FB page and groups, designing graphics for my page, reading, blogging and writing. These are things which depend on my ability to use my hands and can only do these activities if my hands aren’t bad. For days when my hands are bad, I watch movies and use my Kindle/iPad to keep me going. If you’re able to exercise, try a new sport or exercise class. Please see the section called 'Express Yourself Creatively' for further information.

 

Self-help


I used to pooh-pooh the idea of self-help, but now I find it makes a perfect addition to the coping mechanisms I already have in place. Self-help does not work for everyone, but for those it does, it has a major positive impact on their lives. Self-help may involve anything from the typical self-help books to meditation to hypnosis or to the newest thing in town: mindfulness. Here is a link to an article called '30 Self-Improvement Ideas', which gives you a few pointers. I have found that joining some positive thinking pages online has helped me a lot, because I love the inspirational quotes and graphics I find in these places.

One major thing you can do to help yourself is to accept both the good and bad days. Do not beat yourself up if you have a bad day or negative moment. It’s natural to get these. The bad days help us appreciate the good days and by accepting them both helps us accept our illness. Do not listen to those who say 'Other people have it worse than you,' which is like saying, 'You have no right to feel scared or worried or upset, because someone else has it worse than you.' If we applied that logic to happiness, are we not allowed to be happy because someone else is a lot happier than us?


Physical and mental pain is a relative, subjective experience; everyone experiences pain differently. One person's pain is not the same as someone else's pain. We are human beings and we are all different. Do not judge your feelings or coping mechanisms based on someone else's pain. You are you and nobody else. Ride with your feelings and never feel ashamed for feeling sad or afraid.

Please note that these ideas are based on my own subjective experiences and ideas and must not be used to replace medical and/or professional advice that you are currently receiving or have received in the past.

One major lesson I have learned over the years is that everyone has different coping methods. Everyone is different and each person copes differently, with different coping mechanisms. The important thing is to do things you feel comfortable with. Most importantly, do things with love. Your body and mind are the only body and mind you will get in this life, so treat them both with love and nurturing.

I hope you have enjoyed this article. Thank you for taking the time to read it.

Wednesday, 19 April 2017

Lupus & It's Overlapping Friends: Part 1



Lupus is more than enough for anyone to have in their basket, but unfortunately for many of us, we have more than 'just' lupus, we often have other bad eggs to carry; i.e. 'overlap' disorders, which are from a group of similar connective tissue disorders. Such is the horrible bitchy thing about having an autoimmune disease. I have various overlap disorders, such as myositis, vasculitis and Raynaud's.

Lupus is an autoimmune disorder which causes the immune system to turn on the self-destruct button and attacks the body it is meant to protect. A healthy immune system should be able to tell the difference between healthy body tissue and foreign invaders like bacteria, toxins and other nasties. In autoimmune disorders, the body is unable to tell the difference between the healthy tissue and bugs etc, so it attacks everything it sees. The immune system is pretty savage on it's prey.



Molly's Fund Fighting Lupus says "Although lupus most often occurs alone, many people with lupus can also have symptoms characteristic of one or more of the other connective tissue diseases. When this occurs, a physician may use the term “overlap” to describe the illness. People affected with lupus may have none, one, or several of these well-recognized overlap diseases. These overlaps are, typically connective tissue diseases, or closely related group of disorders that affect the connective tissues of the body."

Here are just some of the overlap disorders that may occur with lupus:


Sjogren's


People with lupus may also have secondary Sjogren's, which is another autoimmune disorder that overlaps with lupus. Symptoms include dry eyes and mouth, vaginal dryness, joint pain and swelling, gastrointestinal problems, oral ulcers, eye and mouth infections, and it can also affect the lungs, liver, kidneys, skin and nervous system. There are two types of Sjogrens: Primary Sjogrens, which occurs on its own without any other illnesses, and Secondary Sjogren's, which is what affects people with other similar illnesses such as lupus or rheumatoid arthritis. Both types of Sjogren's produces the same symptoms. Symptoms include dry eyes and mouth, vaginal dryness, joint pain and swelling, gastrointestinal problems, oral ulcers, eye and mouth infections, and it can also affect the lungs, liver, kidneys, skin and nervous system.




Myositis


Myositis is an autoimmune disorder that attacks the muscles. Sometimes, people with lupus (including myself), may also have this disorder. Myositis literally means "inflammed muscles" and the main symptoms include muscle weakness and pain. The pain makes me feel like I am being burned inside out. On my bad days, I can barely lift my arms to brush to my hair and sometimes I am bed-ridden by it. Myositis sometimes causes problems with swallowing (dysphagia) and breathing. Steroids are commonly used to bring down the inflammation and in severe cases, patients may also need immune suppressant medication in conjunction with the steroids.

Rheumatoid arthritis

 

Rheumatoid arthritis often overlaps with lupus. The main symptoms are similar, with inflammation, sore, stiff, swollen and painful joints - but the difference is that RA causes bone erosion and deformity. Other symptoms, such as fevers, fatigue and weakness are common with both illnesses. Lupus is often misdiagnosed as RA due to the similarity of symptoms.




http://www.mygraphichunt.com/free-vector-joint-rheumatoid-arthritis-10881/

Fibromyalgia 


There are studies which suggest that about 25% of people who have lupus also have fibromyalgia. Fibromyalgia causes chronic pain throughout the body with various tender points on the body where the pain is particularly bad. Just like lupus, fibromyalgia produces a wide range of symptoms, which may also include insomnia, extreme fatigue, sore skin and painful sensations, depression, anxiety, weakness, brain fog and other cognitive problems and many more. Diagnosing fibromyalgia is difficult because there are currently no tests that can confirm a diagnosis (though progress is being made here), and just like lupus, the symptoms may mimic other illnesses. Drugs such as Pregabalin (Lyrica), Gabapentin and other anti seizure drugs may be prescribed. Other drugs that may be used to treat fibromyalgia include anti-depressants such as Amitriptyline (Elavil).



Vasculitis


Vasculitis literally means 'inflammation of the blood vessels', and just like lupus, it is an autoimmune disease. It can affect all sizes of blood vessels from tiny capilliaries to large blood vessels such as arteries and veins. The inflammation caused by vasculitis can potentially affect any of the the organs of the bod. There are a wide range of potential symptoms depending on which part of the body is being infected and these may include skin rashes, ulcers, gangrene, migraines, seizures, strokes, psychosis, depression, brain fog, cognitive disturbances, visual problems, vision loss, chest pain, breathlessness, heart attacks, infections and more. Vasculitis is treated similarly to lupus, depending on your case, with steroids and/or immune suppression and or/biologics.

Scleroderma

 

Scleroderma is another autoimmune disease which is described by the John Hopkins Scleroderma Center as "an autoimmune, rheumatic, and chronic disease that affects the body by hardening connective tissue. Scleroderma literally means hard skin." There are different types of scleroderma. "Other symptoms may include Raynauds, oesophageal dysfunction, swollen and painful joints, skin thickening and tightening, "and inflammation and scarring of many body parts leading to problems in the lungs, kidneys, heart, intestinal system and other areas"*. People with scleroderma are more likely to suffer from Raynaud's Phenomenon, which I discuss in a previous blog post. Scleroderma is typically treated with NSAIDs and Plaquenil. Methotrexate and other immune suppressants may help. Treatment depends on the severity of the disease and which parts of the body it affects.

A final note on Part 1 (of 2):


Molly's Fund Fighting Lupus adds: "It is important to be aware of the symptoms that may indicate the development of an overlap disease so that they can be properly managed and treated. The treatments for these syndromes are not typically the same as those for lupus; therefore they require separate care and medications."

For further information:


Sjogren's:
http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome

Scleroderma and Raynaud's:
http://www.hopkinsscleroderma.org/scleroderma/ 

*http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Scleroderma_(also_known_as_systemic_sclerosis)/

Vasculitis: 
http://lupus.about.com/od/relatedconditions/a/Vasculitis.htm

Fibromyalgia: http://www.mollysfund.org/2014/11/fibromyalgia/

Myositis:

http://www.mollysfund.org/2015/02/myositis/

Rheumatoid Arthritis:
http://www.healthline.com/health-slideshow/lupus-and-ra#1

Friday, 17 March 2017

Life With Chronic Migraine

I am writing this as yet another migraine is brewing.

Since the age of 6, I have suffered with nasty migraines. The first time I experienced a migraine was at a birthday party. I was eating my jelly and ice cream and playing Pass The Parcel. Kylie Minogue's Locomotion song was blasting out of the cassette player. I started to see black and white objects floating in front of my eyes, which completely blocked the vision in my left eye. I asked my friend if she could see them too and she shook her head. I tried to ignore it, but then the pain arrived. It was like being struck across the head with a baseball bat and having my skull was cracked apart. The pain kept on getting worse and I wanted to go home. I can just about remember barfing and then blacking out. I woke up on the sofa back home, a few hours later, wondering what the hell had just happened.

From then on, I have been blighted with migraines and they have gotten worse as I get older. The migraines only used to last about a day and occurred maybe once a month. The impact on my life was minimal throughout childhood, my teens and early 20s. Then, a few years ago, the migraines started coming more frequently and became more painful, lasting several days at a time. Now in my early 30s, I am sick with migraines for nearly 3 weeks a month. 



http://migravent.com/wp-content/uploads/2012/01/debutart_jacquie-boyd_6934.jpg
Art work by Jacquie Boyd (click on picture to view the link)

Shortly before the pain strikes, I am tired, anxious, craving sugar, and I start to become extra-sensitive to light and sound. It is like the strange eerie atmosphere before the hurricane arrives. This is the prodrome phase. 

The aura phase usually arrives a day later (though sometimes, my migraines skip the aura and head straight to the attack phase, no pun intended). This is where the black and white trains and worms come out to play, obscuring my vision and making me dizzy (it's strange that it is always the black and white trains and worms!) Sometimes, I go temporarily blind in my left eye. The aura strikes me with dread because I know what's coming next: the pain, also known as the attack phase. 

The attack phase is like a nuclear bomb going off in my head. A heavy thumping pain erupts on one side of my head. My senses are distorted; light, sounds and smells are unbearable. Everything becomes painfully brighter and louder. I can smell the plug-in air freshener downstairs in the kitchen from my bedroom and become extremely afraid of anything scented! I cannot tolerate heat, and experience hot and cold sweats. The sounds of the outside world pummel my ears. Talking lacerates my brain. All I can do is lay in a completely darkened room, with an electric fan blowing on my head and a sick bowl by my side, until it passes. I often vomit during migraines, which is why I have sumatriptan injections. The pain is so awful at times that I've wanted to bash my brains out on the wall to end my misery.

Basic Guide to Migraine Symptoms and Stages


Once the migraine ends, I enter the postdrome phase, also known as a 'migraine hangover'; which often lasts a few days. When the pain subsides, I am so relieved that I experience a brief euphoria. I am completely wiped out and fatigued, and I fall into a deep sleep. I also crave sugar and carbs, feel emotional, foggy, and detached from reality. The world is still too bright, too noisy and too smelly. During this phase, I cannot use sprays, aerosols, perfumes and cleaning products, as they trigger the migraine again. Hot baths and showers are a no-no; the heat and steam are triggers too.


And once that final phase ends; the whole damn cycle starts again: another migraine arrives.


I have about 5-7 migraine-free days a month. Needlessly to say, I am unable to live a normal life like this. This is chronic migraine, which is defined as a migraine more than fifteen days a month. This is on top of the other medical problems I deal with, such as the lupus, myositis and mental health issues. My life at the moment is all about migraines. When I don't have a migraine, I am worrying about the next one.


Migraine itself is classified as a primary syndrome, but it is also a symptom in the diagnostic criteria for lupus (migraine is considered a neurologic disorder). Many doctors say that a 'true' lupus migraine only goes away with steroid treatment. But there are many other possible causes of migraines amongst lupus sufferers, such as CNS lupus, vasculitis, APS, medication side effects, high blood pressure, other illnesses such as Raynaud's and fibromyalgia, stress and migraine as a primary disorder separate from lupus. Lupus presents with an enormous range of symptoms and overlap disorders are common in lupus. This, combined with the many meds we take, makes it difficult to know precisely what is causing the migraines in each individual lupus patient.

I was diagnosed with lupus and myositis in my early 20s, based on a tripod of symptoms: migraines, joint pain and fatigue; and blood tests. Therefore, I assumed that the migraines were lupus-related. My GPs assumed so too, so they believed the migraines would be best handled by the rheumatologist. But the rheumatologists disagreed, because I repeatedly tested negative (and still do) for antiphospholipid antibodies. Over the years, my doctors and specialists have been in disagreement about the cause of my migraines, and believed that it was not their responsibility to deal with them. So due to this, I had to go without treatment for my migraines for many years.


Without treatment, the migraines were excruciating. I would lay in bed, crying and wanting to die. I took stupid risks in my desperation, such as taking abnormal doses of aspirin (my migraines respond quicker to anti-inflammatories, but due to gastritis, I'm not meant to take them). 

Currently, I take propranolol as a preventative measure, and sumatriptan injections to abort the migraines. I am new to the injection pens and it is taking some getting used to. I have to fumble with the release button and the other day, my hand slipped, the needle got bent as it went in and nearly snapped off clean in half in my leg. I needed to lay down after that. The injections work fast - within 10 minutes, they start to work. The sumatriptan makes me sleepy and dopey, and I soon fall asleep. I try to avoid using them too often, because of rebound migraines and developing tolerance to the drug.
The propranolol - a beta blocker - is starting to reduce the severity and length of my migraines. This gives me hope that I can soon get my migraines under control and begin to take some of my life back. I do not want my life to be all about the migraines. They are not part of me. They are just unwelcome visitors, who frequently gatecrash my life, stay for a while, wreck the joint, and then leave me in peace so I can pick up the pieces, for a few hours or days, before they come back. 



http://www.thedailymigraine.com/blog/2017/1/11/when-the-migraine-is-over


Do you suffer with migraines? Please feel free to share your experiences in the comment box or on my social media accounts: 

Twitter: https://twitter.com/world2lupus
Facebook: www.facebook.com/worldaccordingtolupus
Instagram: https://www.instagram.com/atlanta.worldaccordingtolupus
Tumblr: http://worldaccordingtolupus.tumblr.com/


Note: You may be interested in reading this article by another migraine sufferer: 

https://www.theguardian.com/science/2011/may/18/migraine-postdrome-research