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Saturday, 27 June 2015

Seeing the Happy Despite Chronic Illness

When you live with a chronic illness, it can be difficult to see the happy. If you are living with chronic pain, the last thing you feel like doing on a particularly bad day is smiling. The 'key to happiness' can be just as elusive as the search for the elixir of life for most people on this planet, whether you have a chronic illness or not. A positive attitude may help some people living with chronic illness, but speaking from experience, telling a chronically sick person that they 'just need to think positive' is one of the most annoying things you can do. Especially if you are living with severe depression like I am (on top of all the physical problems I already have). But there are other keys to happiness; everyone is different, and different things help different people. 

Everyone must follow their own paths to happiness. And this is mine:

The biggest key to my happiness has been 
to connect with others going through the same thing in a supportive environment. I firmly believe that joining online support groups have saved my life and my sanity. Before I took this step, I was in trouble. In the years following my diagnosis, I drifted in a hazy cloud of self-denial, despair, self-destruction and loneliness. 'Friends' walked away because they grew tired of my constant dramas. My illness was inconvenient to myself and those around me; I did not want it, and my 'friends' and family did not want to hear about it. Joining support groups helped me open up to others who understood what I was going through. I realised that there must be thousands of people all over the world who felt like I did: alone, frightened, hopeless and misunderstood, but talking about it and supporting each other. I have made many good friends through the chronic illness communities and I have discovered the incredible healing power of true friendship.  

By reaching out to others, you can help each other and make a huge difference to each others lives. Helping others can be a huge happiness booster. Psychology Professor Karen Pine at the University of Hertfordshire says that "when we make others happy we tend to feel good ourselves too." Experience has taught me that it is the little things that make a big difference. In January 2012, I set up my own support page on Facebook, to promote the humorous side of chronic illness (believe me, there is a humorous side) and to reach out to other people all over the world. My mother taught me from a young age that knowledge is power. When people come together in a support group to share information and advice, you are empower each other to take charge of your illness and fight back. By supporting each other, you are helping each other. 

I am thankful we live in an age where we can communicate with people all over the world at the touch of a button. Many chronically ill people are housebound and cannot attend local support groups, or there are no local support groups available. But thanks to the Internet, we can support each other online. By being there for someone, by sharing advice and support, you can make a huge difference to someone's life. Like I said earlier, joining support groups saved my life and I am grateful to those people who are there for me, supporting me and cheering me on. 

Thank you for saving my life every day. You are my friends and my heroes.   

To draw a conclusion to today's blog post, I will now leave you with a final thought: the most important lesson I have learned about happiness is that each person's idea of happiness is different. You do not have to measure up your happiness against someone else's, because it will not make you happy. In fact, it will make you feel depressed. I spent many years, especially my teenage years, trying to measure myself up against other people and feeling inadequate. Everyone else seemed to have had it all figured out: they were seemingly happy, confident, outgoing and at ease with themselves and their lives. Then I grew up, I left my teenage years behind me and entered adulthood with a lot of emotional baggage. But it was life experience, combined with being diagnosed debilitating chronic illnesses, that made me realise that everyone is in the same boat; even the most happy person in my eyes does not, in fact, have it all figured out. We are all in this together. Life experience has also taught me that placing unfair expectations on yourself is the key to misery. You do not deserve it. You are you and in the words of Dr Seuss, "there is no-one Youer than You." Your own personal keys to happiness are unique, made just for you. Use them and embrace them. 

kristinrutten.com


Tuesday, 2 June 2015

Unsolicited Advice

If there is one thing that annoys me more than anything about being chronically ill, it is receiving unsolicited advice. This post is for those of you, who like myself, have been subjected to unwanted and unsolicited advice.

A few examples of the unsolicited advice I've been given before:

You shouldn't take those toxic medicines. Interestingly, most of the people who offer me 'advice' like this do not have lupus. I don't take my toxic medications for fun, I take them because they keep me alive.

My friend has your illness and he doesn't need medication for it. Well good for him! But everyone is different. No two lupus sufferers are ever the same, because it affects each patient differently with a wide variety of potential symptoms that require a wide variety of potential meds to treat it

My aunt has that condition and she treated it herself with [insert whacky remedy]. Please see above. Unfortunately, I'd like to add that there is no miracle cure for lupus and I'm sure once a cure is found, us lupies will be the first to know!

You just need to exercise. It's not quite so easy to exercise when just standing up is enough to wipe you out for the rest of the day. NEXT!
 
Take echinicea [or any other substance that increases immune system activity]. No thanks, my immune system definitely does not require any extra help...it does enough damage on it's own!

Those painkillers are addictive, you shouldn't take them. Would you like to swap bodies with me for 24 hours???
All you need to do is think positive. Okay, here's a deal. We swap bodies for 24 hours and I'll tell you to 'think positive'. Most likely you'll want to decapitate me. If you had the energy to.





Most people who dish out unsolicited advice to an ill person do not actually have the illness themselves and most likely are not licensed, qualified healthcare professionals; the most they will know about your illness is not very much, if anything at all. Unlike me, they can go about their everyday lives, working, studying, whatever, without depending on other people for even my most basic needs. Life with lupus is an unrelenting round of flares, medications, medical appointments, health crises and everything else. I do not have time for unsolicited advice and it will not help me. I just want to make it through the day.


Should you be the unfortunate receiver of unsolicited and unwanted advice, here are a few tips from from www.invisibledisabilites.org:

"...if you decide that the unsolicited advice is not wanted, you can try to ignore it. But sometimes people do not take a hint. So if you can no longer ignore the advice-giving, I found several responses that you can give, depending how polite or direct you want to be:
  • “Thank you, I’ll take that into consideration.”
  • “That’s a good idea, but I have my own way of handling this."
  • “I am glad that works for you. There are so many different ways of doing things.”
  • “Thanks, but I’m fine.”
  • “Thanks, but I don’t really need advice. I’m already researching a solution.”
  • “I’ll ask for advice if I need it.”

Or you can always try some funny or sarcastic comment and see if they stop…*

People offering advice have many motives. They may want to offer 'advice' for one/some/all of the following reasons:

  • They are trying to help
  • They feel powerless and do not know how to help you in any other way.
  • They are nosy and interfering.
  • They believe every health scare story they read in the papers.
  • They simply do not understand what it is like to have a chronic illness.
  • They're looking for new customers.
  • They have had a bad experience with conventional medicine."

*http://www.invisibledisabilities.org/coping-with-invisible-disabilities/relationships/unsolicited-advice/

Sunday, 5 April 2015

Helping People in Need

“On the parable of the Good Samaritan: "I imagine that the first question the priest and Levite asked was: 'If I stop to help this man, what will happen to me?' But by the very nature of his concern, the good Samaritan reversed the question: 'If I do not stop to help this man, what will happen to him?”

Martin Luther King Jr., Strength to Love

 
I have benefited from the kindness of a stranger a few times in my life and I will never forget those times that a stranger stopped to help me when I was in need. The most poignant example of this happened in December last year, when I collapsed in a Sainsbury's car park and strangers - shoppers, Sainsbury's employees and people from the street - came to my aid and helped my partner look after me until the ambulance came. I cannot remember much about that day, but what I do remember is the Sainsbury's first aider being right by my side, speaking to me, reassuring me and dabbing away the blood (I fractured my eye socket and shoulder when I fell), while her boss grabbed blankets and towels from the store to keep me warm and re-directed traffic. I was touched by their kindness in a way that I cannot describe - it goes much deeper than being thankful for their help, much deeper, right into my soul.


The importance of kindness
We live in a world that is often dark and frightening, but it is not without hope and light; love, hope, friendship and kindness punch holes into the darkness. The majority of people on this planet are good people, full of goodness, light and kindness. These people make life worth living for and they chase away the darkness; these are people who will stop to help strangers in need. I will never forget the people who looked after me that day. I do not feel that anything I can do will ever be enough to express the depths of the gratitude I have for my good Samaritans. I wish they could see my feelings, because then they would know. When I was well enough I returned to the store to thank them in person. All that mattered to them was that I was back on my feet. They were very modest about it, but to me, they are my heroes.


While we are on the subject of good Samaritans:


5 Ways You Can Help A Friend With A Chronic Illness:



1. The most important thing you can do to help someone with a chronic illness is to be there for them. That is what counts the most. 

2. Please be patient with your friend. Being chronically ill is a constant battle, 24 hours a day, and they don't get a break. Chronic illness is a draining whirlwind of symptoms and emotion. Your friend may get angry, or feel low, or need to vent. That is okay. Be there for them. Listen. Even if you don't know what to say. Your presence is what is needed more than anything else during these times. 

3. "Be there if your friend needs help, but encourage them when they want to do it themselves."*

4. Offer to help with chores, errands or anything else that they might need. Band Back Together have these suggestions: "Offer specific forms of help - "I'm going to the grocery store, do you need anything?" or "Can I do some laundry for you?" Any number of household things, your friend might need...Volunteer to watch his or her children...Offer to watch his [or her] kids during doctor appointments...Chauffeur your friend around to places she may need help...Offer to take your friend to the doctor and take notes for them"* 

5. Learn about your friend's illness so you can understand what he or she is going through. But most importantly, this may even save their lives if you learn how to help them should an emergency situation arise.



For more ways you can help someone with a chronic illness, I recommend Understanding Someone With Chronic Pain by Wikihow: 

http://www.wikihow.com/Understand-Someone-With-Chronic-Pain


And so this concludes this post. I hope to catch up with Day 4 tomorrow (while on Day 5!). Wishing you a fabulous weekend! 

*Extracts from this amazing article by Band Back Together: http://www.bandbacktogether.com/how-to-help-a-friend-with-chronic-illness/

Thursday, 5 March 2015

Foggy Brains: Lupus and Brain Fog


Brain fog is a common complaint in lupus and other chronic illnesses including fibromyalgia, chronic fatigue syndrome, stroke and many others. For me, it is one of the most frustrating aspects of dealing with a chronic illness. It can be caused by the illness itself and/or, or by the side effects of certain medications. “The term “brain fog” describes those times when you can’t think clearly or don’t even know where you are or what you are doing.1” When the brain fog strikes, my brain turns into mush: I lose the connection between my brain and mouth, words get jumbled and I forget what I'm saying halfway through a sentence. I walk into a room and forget why I'm there. My thoughts seem to empty out of my brain and a thick, woolly fog fills up the empty space. I do strange things - which seem perfectly logical at the time - such as putting the kettle in the fridge or putting on items of clothing the wrong way round. Many people describe it as being 'zombified,' and I totally get that, because that's exactly how I feel when the fog hits.

The Lupus Foundation of America interviewed a neurologist, who said “Lupus very commonly affects people’s memory. In fact, studies have shown that as many as 80% of people with lupus have some problem with their memory at some point in the disease process — fortunately for many people this problem is mild. There is no medication that we know of that definitely helps with this. Actually, more research has shown a benefit with interventions that include education and tips about coping strategies as well as the importance of treating fatigue, depression and pain in helping improve memory function."2

 

 

What Is Lupus Fog?


"Lupus fog is a general name for the cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself. These cognitive problems are often worse during flares. The good news: Lupus fog doesn’t usually get progressively worse, like dementia or Alzheimer's disease", says Lisa Fitzgerald, MD, from the Beth Israel Deaconess Medical Center in Boston. Instead, memory issues will probably wax and wane, just like other lupus symptoms. The exact cause of lupus fog is hard to pin down, experts say. In some cases, lupus can damage cells in the brain, leading directly to cognitive problems. However, in most cases other factors play a role, including fatigue, stress, and depression. Lupus fog is sometimes worse in people who also have fibromyalgia. Although it's possible that side effects from drugs such as NSAIDs or steroids could worsen lupus fog, experts say that switching medicines rarely resolves the problem.3"

 

Some symptoms of brain fog include:


  • Memory problems
  • Confusion
  • Disorientation
  • Cognitive dysfunction
  • Inability to 'think clearly'
  • Difficulty concentrating
  • Decreased attention span
  • Feeling mentally drained
  • Feeling like a fog is hanging over your brain
  • Problems articulating and/or finding words
  • Forgetting what you're saying half-way through a sentence
  • Getting tongue-tied easily
  • Absent-mindedness
  • Feeling sleepy




Kim Nault, writing for The Lupus Magazine, explains: 

“An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person...Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity...Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating."4


 

Kim offers the following "Lupie Cognitive Survival Tips":


• Do not multi-task (it can prove dangerous)

• Do not overbook your daily schedule

• Do not over commit yourself

• Prioritize appointments/events/activities (don’t double book things on the same day)

• Determine your peak energy time of the day (schedule needs around that time)

• Reduce background noises when needing to focus

• Use only one calendar (mark doctor’s appointments in one color)

• Set timers for reminders (cellular phones and your PC have different applications)

• Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)

• Keep things simple

• Learn to say “no” (we do not have to commit to every event or activity)

Kim adds "Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope...
Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!"5

The writer Kim Nault, has her own blog called Redefining Myself With Lupus and MS: http://www.redefiningmyself.com/

In my own experience, Brain Fog feels like I am trying to wade through very thick mud and not getting anywhere fast. Sometimes, it feels like my brain is very woolly, with my thoughts getting caught and trapped on the fibres. I know my thoughts are there, but I just cannot seem to push them through into solid existence. It can get very frustrating. My brain cells feel as like they have been liquidised with my daily smoothie. Often, it feels like my brain has gone to sleep. It strikes me without warning and can last from minutes to days, sometimes weeks. Most of the time, I laugh about it, but sometimes it’s not funny, especially when it hits me during medical appointments.


Tips on dealing with brain fog from WedMD:


  • Put it in writing. "It's really important to lighten the load on your working memory," says Janet Foley Orosz, PhD. Instead of trying to keep stuff in your head -- and failing -- write it down. Write everything down -- every household chore, every birthday, and every doctor's appointment. Take notes during conversations. You need to get in the habit of writing down even the stuff you’re positive you would never forget.
  • Stay organized. Keep everything in a daily planner so you don't end up with your notes on random scraps of paper. Consult it many times a day. Come up with a schedule and manageable to-do list -- or even just one specific goal -- for every day. If you have a smart phone, get a good note-taking app that you can access on your phone and on your computer.
  • Prioritize. "I divide tasks into two categories -- things I must do and things that would be nice to do," Orosz says. "Then I only do the must-dos." She says an alternative way to organize is to rank to-do items by how much stress they're causing and to get rid of the stressful stuff first.
  • Say it out loud. "Things seem to stick better in the short-term memory if you say them aloud," says Robert Katz, MD, a rheumatologist and associate professor of medicine at Rush Medical College in Chicago. When you meet new people, use their name a few times in the conversation. After a chat or meeting at work, repeat the main points -- it will help solidify your memory and let others fill in anything you missed.
  • Time yourself. Orosz says that people with lupus fog should figure out when they're most efficient and schedule important tasks for then. Maybe it's a particular time of day or after a medication dose. Keeping track of time can help in other ways. "Allot a specific amount of time for a task and keep yourself to it with a timer," she says.
  • Stretch your memory. Playing word games and doing crossword puzzles can help sharpen your memory. "Many of the techniques that help older people who are getting forgetful will also benefit people with lupus fog," Fitzgerald says. Keep your mind active and engaged.
  • Keep good habits. If you have lupus, you need to take care of yourself. Reducing stress, taking naps, and getting enough sleep at night could help relieve lupus fog symptoms. "Regular exercise is important," says Fitzgerald. "It does seem to make the brain sharper."

Here is a video made by Christine Miserandino, on the subject of brain fog:

http://lupus.webmd.com/community-tv-lupus-11/default.htm?vid=vd-1916-extv-0011

 

It is not just lupus sufferers who experience brain fog. It can occur in other conditions including fibromyalgia, ME, MS, medication side effects, nutritional deficiency, diabetes, celiac disease, lyme disease, chronic viral infections and other autoimmune conditions.

I'll leave Web MD to conclude today's adventure into the world of lupus:

"Having lupus fog can be terribly discouraging. It can undermine your confidence and even your sense of self, Orosz says. It’s important to remember that it's not you. Lupus fog is just another lupus symptom -- like achy joints or facial rash. Don't despair and don't settle for the symptoms. Talk to your doctor and see if you can get a referral to someone who specializes in treating lupus fog. The right treatments will help you feel better and more confident again."6

 

Notes

1. http://www.lupusny.org.
2. http://www.lupus.org/webmodules/webarticlesnet/templates/new_donatenow.aspx?articleid=636&zoneid=43
3. http://www.webmd.com/lupus/d2n-coping-with-lupus-11/lupus-fog-memory-problems
4. Extracts from the main article:
http://www.prlog.org/10844611-the-lupus-magazine-understanding-lupus-brain-fog.html
5. As above

6. See #3 above