Tag Archives: ME

THOUGHTFUL SPOT//Baby Steps – Pass the make-up bag. 

January 12, 2017

It’s all about the baby steps. I’ve had a good couple of weeks overall. I have been up and dressed with makeup on every day! I’ve been around the house helping with chores and even contributing to our never ending food purchase, preparation, and cooking conveyer belt, that we have all grown to love so much with healthier living. And I’ve been doing this pretty consistently for the past few weeks. Now, this may not seem like a lot to shout out about, but when you have lived life with depression, chronic fatigue and fibromyalgia, then being part of such seemingly small things, is certainly nothing to scoff at. Continue reading

Fibro/M.E./C.F.S – Relief

June 9, 2015

relief from pain

Living with constant pain and fatigue is literally exhausting. There is little or no let up. I have learnt over time that my stamina is almost zero if I am pushed to a full day of activity. My ability to do the most simple tasks is almost impossible on bad days.

It wasn’t always this way. I have always been a high energy person and my mind has always been busy. And until three years ago my body kept up. To a point. I had a busy social calendar and worked full time. But things changed and I have had to reassess my life and adjust according to my bodies needs.

As I have got older the fatigue is definitely getting worse. It’s a feeling of constant flu, my heart rate drops and there is weakness in my limbs. I sweat profusely and breathing becomes a problem. Walking is hard. Carrying shopping bags is enough to leave me having to lie down.

ME or chronic fatigue syndrome is an auto immune disease. The adrenal system is exhausted and even the smallest stress on the body or mind leaves you with no energy and a need to rest. My ME was brought on by glandular fever or the Epstein Barr virus. My system has never recovered even 20 years on.

When I was diagnosed with fibromyalgia as well as the chronic fatigue, life took another turn again. Pain in the muscles, ligaments and tendons leaves you with a constant feeling of toothache all over the body. It’s hard to get comfortable, it’s hard to relax and sleep does not rejuvenate you.

But in my ongoing quest to get better and live a life that is moderately full, there are a number of things I have changed that I believe have made a notable difference. There are still restrictions on me. I have given up work and my social life is nothing compared to five years ago. Traveling is virtually impossible right now and even just a full day of house work and shopping can leave me needing rest for a few days. But on the whole I am much improved compared to even six months ago. Here are my tips for relief:

Pacing

Pacing was the key advice that I took away from the pain management course that I attended through the NHS. It basically means that you have to be aware of your limits. It means that whether you’re having a good day or a bad day you should maintain a steady level of activity. Still being active on bad days but not pushing too hard. And on good days not doing too much because you are so excited to feel well. You also should allow yourself time to prepare for events and rest after.

Learning to understand your body as it is right now is key. You must know your limitations. It’s so very hard to say no to things and often you feel you should be saying yes. But pacing what you do is essential to getting enjoyment in the smallest of things. If you blow out occasionally that’s OK too. But accept you will pay for it for a few days.

Rest

This may seem obvious, but sometimes its the obvious that is avoided. Particularly if you have a hectic and busy life with many responsibilities. But scheduling rest into your day is essential. If you do not rest when your body craves it, then you will burn out for sure. You are no good to anyone if you burn out. So try to prioritise yourself too. Even if its 20 minutes at lunch time or in the afternoon. If you can just switch off your brain and relax your body for a short time, you are giving your system a chance.

Anti-inflammatory juice daily

When the pain was really bad I took to some research. I have dabbled with different diets over the years. I found that certain changes to my diet definitely made me feel more energised and reduced the pain.

Every morning I make a fresh juice/smoothie. There are several key ingredients that help with inflammation reduction and also boost immunity. Ginger is the most important for inflammation, together with blueberries, leafy greens and flax seeds for immunity. The recipe is:

  • 1 cup of mixed frozen berries including blueberries
  • 2 inches of fresh ginger chopped
  • 1 green apple leave skin on
  • Handful of kale or spinach
  • 3 tbsp of natural live yogurt
  • Tsp cinnamon
  • Tsp flax seeds
  • Honey to sweeten if necessary
  • Cup of water

Blitz together and drink as soon as possible. The nutritional value drops the longer you leave to drink it. I use a Nutribullet but a standard blender will do a similar job.

Moderate exercise

Exercising is the last thing you feel like when you are in pain or fatigued. But there are proven benefits to exercising moderately when you have chronic illness. It produces happy hormones and reduces stress in the body. So even if its going for a short walk, an easy swim or stretching, anything is better than nothing.

I am now doing gentle yoga every other day. I find that foremost it relaxes me. But I feel a sense well-being afterwards too. I ached a bit for the first few days, but now I look forward to it. Finding something you enjoy is key. Anything that exhausts you or you find a chore, will do nothing for your spirit. So try something that is calming. Tai Chi is also supposed to be very good and very gentle.

Cutting out sugar

Sugar is poison to anyone with an inflammatory or auto immune disease. It gives no nutritional value at all. In large amounts it is found to cause diabetes and other chronic health conditions.

If you can then start to cut it out of your diet. If you have to do it bit by but that’s fine. But make it your aim.

Cutting out gluten

This is relatively new to me. But I am already seeing benefits. My digestive system is much calmer. I’m not bloated and I don’t retain so much water.

Gluten irritates the system and causes inflammation. So switching to gluten free products will help reduce pain and fatigue.

Dietary supplements

Please read my post on nutritional supplements.

Epsom salt baths

This is an age old remedy but bit works. Epsom salts are magnesium so help to ease the pain in joints and muscles. Add a cup of salts to a warm bath and soak for 20 minutes. You can usually pick these up in your local chemist.

Ibuprofen gel

If you have specific pain in any area of the body then using a gel instead of a oral tablet can help to direct the pain relief. If you have problems in the lower back, neck or shoulders, then massaging ibuprofen gel into the affected area gives a direct hit of relief.

Arnica oil

Arnica oil is a plant oil that you can use for massage into tired and painful muscles. The oil warms, soothes and tones and brings a welcome relief. Ask your partner or friend to massage into the body, focusing on the worst areas. I use Weleda Natural Arnica Massage Oil.

Dealing with stress in your life

You may not realise it but if you have ongoing stress in your life, this will not help your pain and fatigue. Stress is directly linked to your body and the immune system. Without addressing stress, the pain may continue. Look to reduce any stress factors wherever you can. Some levels of stress in life are standard and we cannot do anything about them. But there are other stresses that we can control. Aim to reduce these stressors wherever you can and pain will improve.

Addressing any mental health issues that drain on your energy.

Living with constant pain and fatigue certainly gets you down. Depression and anxiety are often linked to both fibromyalgia and ME. For me the mental health illness came first. But as the ME and fibromyalgia got worse I definitely started to feel that my mental health was having a direct impact on my body. I know that when I am low or anxious, my pain and fatigue are so much worse. So if you do think you may be depressed or anxious then addressing these issues as a separate health problem may bring you relief in your physical body. All the pain and fatigue may improve slightly as your mental spirit brightens.

Sports deep tissue massage

I was introduced to this following a counselling session of all things. My therapist noticed how far up my shoulders were. They were around my ears! And this is because there was so much tension in my body. My body and spirit were drained. He recommended a deep tissue massage to relieve toxins.

I did some research and a sports massage therapist was recommended to me. He came to the house and I explained my situation and the conditions I suffer with. He had done some research. We worked on the most important areas at first, which for me were my back, neck and shoulders. Later we moved to legs.

I have to tell you right now, it hurt! A lot! But in a strange way there was relief in the pummeling of the tight muscles and afterwards there was such warmth and comfort. I ached a bit the following day but I drank lots of water, as he had recommended and all in all I felt better. I continued with the massages for some time until things improved.

Now, if the tension builds I go for a massage and work out the tension. It may not be for everyone, but if you feel you can face the initial pain, then you may get relief in the long run.

Sleep Aids

Good quality sleep is so very, very important. For everyone. But even more so when you have a chronic illness. And ironically its one of the first things to go and become a problem. Pain makes getting relaxed and comfortable enough to sleep, very difficult.

There are a number of things I do. I take magnesium supplements to aid sleep. I swear by lavender oil. My favourite thing to use is the ‘This Works Deep Sleep Dream Team‘ which is a pillow spray and stress less roller ball for your wrists. I use this every night. The fragrance is relaxing and calming with lavender, patchouli and chamomile. The roller ball has lavender and frankincense.

Lighting a calming candle and reading also help me. I try not to use tech equipment an hour before sleep.

Standard Pain killers

It might be an oldie, but its a goodie. Whilst I try wherever I can not to use too many pain killers, I do take them. They are prescribed for me. I use lesser strength on good days and stronger on bad. Talk to your doctor about the best for you. I take an ibuprofen tablet for inflammation too.

There are unfortunately no real answers for those living with chronic pain and fatigue. It appears to be an ongoing medical research dilemma. But if you can gain some relief from any of these approaches, then its worth trying.

Please let me know in the comments if there are any remedies that you swear by. Stay strong my loves.

Onwards and upwards. Kiki xxx

Techniques- Let’s pretend

March 24, 2015

lets pretend wear a different mask image

Let’s play let’s pretend. Do you remember that as a child. Pretending to be someone else, usually a grown up or a doctor or teacher. It was a game that offered hours of fun pretending to be someone else. Playing make believe.

Now I’ve dabbled with acting over the years. But what we are talking about here today is about wearing a different hat for a few hours. Putting a smile on. About pretending you are ok when in fact inside, you feel like crap or like a bag of Jelly.

Over the years, having lived as a depressive and anxiety sufferer, it was always hard for me to show the world my true self when I was depressed or anxious. My self at my very worst and most vulnerable. This has generally only been seen by those closest to me. Historically, if I’m in a bad way I tend to pull back from socialising and mixing with others until I’m strong enough to face everyone again, with a smile. That’s the way I like to do it. Thats my coping mechanism.

I may be a depressive but I’m actually a pretty happy person. I don’t actually like to bring down the mood of a friend or situation. So when the time is right and I’m somewhere between heaven and hell, I wear my ‘I’m fine‘ hat. A bit like Worzel Gummidge. I change heads. To the Kiki that I really am. The KIki who isn’t depressed or anxious. I pretend.

Now you may think this seems crazy or far fetched. The truth is many people use this technique every day. It is a rare thing to see the open and naked truth of a person every day. We all use little techniques to get through.

Over the years when I’m wearing the ‘I’m fine’ hat. Or that smile. I’m pretending I’m ok. And what I’ve found over the years, is that if you pretend for long enough, some of it becomes reality. I pretend I’m ok. So I am ok. The make believe becomes a reality.

What this does again, is change your focus. Rather than being consumed inside your head thinking all the negative thoughts and preempting every possible anxious situation, you pretend that you’re ok. The person you are at your best. Or the best version of yourself. You pretend all is well. You pretend what ever makes you feel strong and happy.

Its about giving yourself a break from the reality of what’s really going on inside. If you can pretend for a few hours that you’re doing ok. You might actually find that you start to feel ok. That you gain some strength and momentum that actually spurs on the next stage of recovery. To actually be ok.

It’s not about misleading anybody. It’s about giving you strength. Taking care of your battered heart and soul. Not everyone wants to bear their raw soul. And to be honest, in my experience most people don’t want to see it. They have enough of their own soul to deal with. And that is fine. It’s your soul, so treat it with kid gloves. It’s faking it ’til you’re making it. It’s About tricking your own mind into thinking that you’re just fine even if you’re not.

So the next time you’re low or anxious try taking some deep breaths and tell yourself the words ‘I’m fine’ and although it may be the furthest thing from the truth it actually changes how you feel. Your body relaxes, tension releases.

Another way to instantly improve your mood is to smile. By smiling you release happy chemicals. You cannot be anxious if you’re smiling! So smile away. Pretend you’re fine. If nothing else it buys you time to work on being fine. Fake it whilst you make it. And I promise that there will come a day where you don’t have to pretend any more. You will be fine. You will make it!

Let me know your thoughts. Love and hugs, Kiki xxx