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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