Going for a Song

One of the problems with having CFS/ME is you become very isolated. It’s a very lonely illness, as are many debilitating illnesses. You just cannot get out and about as much as most people and travelling is hard work.

Although I have been living in the same area for twelve years now, the number of people who live in the area who I consider friends I can count on one hand. Most of the friends I made here were at university, where I have spent eight of the last twelve years. Sadly (for me) most of my university friends have scattered to the four corners of the country, and I can see them only occasionally.

Anyway with the exception of my husband I see very few people. My family visit when they can, but I spend at least half of all my waking hours alone (other than Walter). Walter is a wonderful little individual, and I love him dearly, but at the end of the day he is a dog, and it really isn’t possible to have a meaningful conversation with a dog. Or any kind of conversation for that matter.  He has definitely alleviated my loneliness, but he can never replace the need for human company.

So with all this in mind and my steady improvements in strength and stamina, I started thinking about how I might meet some new friends. I remembered seeing a programme about the Women’s Institute (WI) that said that a lot more younger women were members these days and that it wasn’t just about baking and jam making (not that I have any objections to backing and jam making). So with that in mind I decided the WI might be a good place to start. I found several WI groups in my area and one in particular looked promising: the Bath WI. They had an up to date website and even a facebook page. I felt this boded well for the group to be young and thriving. And so I plucked up some courage and went along to their meeting at the beginning of July.

Well, they turned out to be a lovely and welcoming bunch of ladies. There were lots of other new members too, so I felt comfortable. The first meeting was a tea tasting session, which was fascinating and very enjoyable, and all in all a great success. So I went to their next meeting at the beginning of September. I recognised a few people, and a few ladies recognised me. This meeting was a singing lesson taken by the assistant director of music for Bath abbey. Now, I used to sing a lot and have been in choirs on and off for a lot of my life. But it was only during this meeting that I realised how much I miss singing. I had a wonderful time. It was a fun and light-hearted evening with a good dose of singing thrown in. I got home very tired but feeling very happy and positive. I definitely think it may be time for me to find a choir again.

So I shall be off to the WI meeting again next month. I’m already looking forward to it. And I shall be investigating local choirs – yet another opportunity to meet more people.

Down by the River

One of the difficult things about CFS/ME is it’s very difficult to stay fit. In fact when your health is below a certain level it’s impossible. You just don’t have any energy to spare for exercise. It’s getting used up on much more basic everyday tasks.

Two years ago we got our dog Walter. At the time he was a puppy and I hoped that as Walter grew up and could walk further I would get stronger and be able to walk further too. Unfortunately that didn’t go to plan, because as Walter inevitably grew I deteriorated. However, two years later I feel ready to start improving my fitness levels more seriously.

I have been gradually improving them for the best part of a year now, and Walter and I have a little circular walk we do through our village. As the months have gone by I’m gradually extended it as my strength has improved. The circuit started out as just over a kilometre and then I expanded it to about two and three quarter kilometres. Last week I suddenly realised that a path along the river that has been closed for a long time had reopened and would be a perfect opportunity to expand my route and give Walter a new and hopefully interesting outing.  It also increased the circuit to three and a quarter kilometres and included several hills. So last week I tried it for the first time. I did cut it a bit short as I felt I was pushing my luck, but we did it again this week and I did the whole circuit.

Walter loved it. The day after we first did it I was only able to do a shorter version for our walk, but Walter really wanted to cross over the road and go down to the river. He stood by the crossing and whined, and looked at me and back over the road and whined some more. Never has he expressed such a desire to do a particular walk. On that occasion I had to say no, but we did it again yesterday, and he trotted eagerly over the road and we went down to the river. He had to stick his nose into everything. Obviously there are lots of new and exciting smells by the river.

Eventually I hope I can link this walk up with another one I do along the canal, which at the moment requires a trip in the car. But it’s something I need to build up gradually.

So why the sudden obsession with fitness? Well apart from the fact that I need to build up some physical strength, my husband and I are hoping to make a trip to the Lake District later in the year and I really want to be able to do a bit of walking. In my pre-CFS/ME life we did a lot of walking in the Lake District. In fact when I first got CFS/ME I said I would know I was better when I could walk up Skiddaw again (a very steep walk). Well, I don’t think Skiddaw is on the cards this year, but I’m hoping I might manage some shorter and less demanding walks in the fells.

The Wedding Day

My sister got married on Saturday, and I made it through the day and actually had a good time as well. As I have mentioned previously members of my family were very concerned about me overdoing it on the day. I however, had already decided I would overdo it and pay the price.

We were very lucky, the weather perked up and we had a beautiful sunny day. My sister looked absolutely stunning in her dress and she had a colourful array of bridesmaids including myself. The service was held in the same church that my husband and I got married in nine years ago. To me, it seemed all that a wedding should be, both solemn and joyful with moments of light heartedness. As my husband and I predicted both the bride and groom were a little emotional, and we could all see genuine happiness shining out of them both.

For me the day was a little difficult as I wanted to support my sister fully, but I was aware I had limitations. Before we left my parents house my concerns got the better of me for a few minutes and I was a little grumpier than I meant to be. But once the day got going I was swept along and able to enjoy it and be there for my sister. In fact it was only when I lay down on my bed at quarter to one the following morning that I realised quite how exhausted I was, and that I ached from head to toe. I really had put my all in to the day. Fortunately I slept well, despite the heat and I managed to maintain a semblance of normality all through breakfast the following morning. Then my exhaustion hit me and I went into survival mode for the next day or two. My wonderful husband looked after me and took me home and I had a very quiet day yesterday (Monday) to allow me to recover. Today I almost feel normal again, which is a bit of a relief.

So was it worth it? Of course, without a doubt! Yes, I paid for all my effort and input on the day, but I wouldn’t have done it any differently. It was a day for ignoring the limitations CFS/ME puts on me and living my life to the full. Not something I can do every day, but then it’s not every day that my little sister gets married.  

An Introduction to Painkillers

This post is about the basic forms of pain medication that you can buy over the counter. There is a lot more available on prescription. If you find the over the counter options ineffective talk to your GP who may prescribe an alternative. To discuss some of the points I will be using a useful tool called ‘Numbers Needed to Treat (NNT)’ as it is helpful in comparing the effectiveness of painkillers. It means the number of patients you give a drug to, for one patient to have that treatment work. So when you talk about NNT for painkillers it’s the number of people you need to give the painkiller to for one patient to have pain relief. With all the drugs I am going to talk about please follow the advice on the packet or the directions you are given when you take them. I’m not going to go into details about that here as you can find it all on the packets if you buy painkillers and you will be given suitable directions if they are prescribed.

• Paracetamol – A lot of people think that paracetamol is useless and certainly there are more powerful painkillers. However, used correctly paracetamol can be effective. The first thing that you should know about paracetamol is that it is at it's most effective when taken regularly. A couple of paracetamol occasionally won’t do much for more severe pain, but taken regularly it can make a difference.  It can also be particularly effective when taken in addition to other painkillers. For paracetamol the NNT is 3.8 and that’s not bad. Let’s call it 4. So for every 4 patients who take it, 1 will get pain relief. Paracetamol also has the ability to reduce temperature if you have a fever. You may come across branded paracetamol that has something like ‘Plus’ or ‘Extra’ in the name. Often this means that a small dose of caffeine has been added. There is a small amount of evidence that caffeine does have painkilling properties, but it can also cause headaches in some situations, not to mention that it is a stimulant and it will keep you awake. If you really find the combination of caffeine and paracetamol effective I would advise just taking your ordinary paracetamol with a cup of coffee or tea. Paracetamol is a very safe drug when used at the correct dosage and the vast majority of people can take it.

• Non-steroidal Anti-inflammatory Drugs (NSAIDs) - This includes things like ibuprofen and diclofenac which you can buy in the UK and other drugs that can be prescribed. There are a huge number of different NSAIDs and most of them are better at slightly different things. Generally speaking they are an effective group of painkillers. As the name indicates they have anti-inflammatory properties and so they work particularly well on injuries where inflammation is involved. Having said that they can be effective on many types of pain. The NNT for ibuprofen is 2.5, so already you can see it is a more effective painkiller than paracetamol. Diclofenac has a very similar NNT.  There are certain groups of people who shouldn’t take NSAIDs, so if you’re not sure have a chat to your Pharmacist or GP.

• Aspirin - It is very similar to the NSAIDs as it also has anti-inflammatory properties. It has a lot of uses other than as a painkiller, but as a painkiller it wouldn’t be my first choice. The NNT is 4.4 and it is sometimes thought that if it had been first introduced in today’s world of comprehensive clinical trials it would never have reached the market as it isn’t as safe as current standards require. I would suggest sticking to the more effective NSAIDs if you can take them, and if you can’t you shouldn’t really be taking aspirin either.  In particular aspirin should not be given to children under 16. Having said that aspirin can be extremely useful in managing certain health problems unrelated to pain relief, and it is often prescribed in low dose for various reasons where it's benefits outweigh it's problems. My only recommendation for it as a painkiller is that gargling soluble aspirin can be effective for relieving a sore throat.

• Codeine – This is part of a group of drugs called opioids. This group includes drugs like morphine. Codeine is not available to buy on its own in the UK, but it can be bought in combination with other drugs.  On its own codeine is extremely ineffective. The NNT is 16.7 which is bordering on useless.  But combine codeine with other drugs and miraculous things happen. In particular paracetamol combined with codeine (co-codamol) can be hugely effective. Co-codamol has an NNT of 2.2 which makes it one of the best painkillers out there. Far better than the sum of the parts would indicate. This figure is for a dose of codeine that cannot be bought over the counter. But it is possible to buy a lower dose version, which whilst not as good theoretically, many people report as being extremely effective. It is also possible to buy combinations of codeine and ibuprofen. As a side note I should mention that codeine is addictive. Whilst you are extremely unlikely to become addicted when taking co-codamol or the ibuprofen containing equivalent for a few days, if you are finding you are wanting to take it more and more please seek medical advice.

As a final note I should mention that you do not need to buy expensive brands of painkillers unless you really want to. Some combination painkillers are only available in brand form, but generally speaking most are available unbranded and considerably cheaper than their branded counterparts. The brand does not make it more effective. The only exception to this is that some branded products offer special modified release technology, which may mean you absorb the drug faster or over a longer period. But for ordinary paracetamol, aspirin, ibuprofen and co-codamol the unbranded product will be as effective as the branded one and considerably cheaper.

I have just added an email address for the blog up on the top right of the page, so if you have any questions please feel free to email me.

Pain is inevitable, suffering is optional

I thought it was time for some more practical and useful posts, and a break from my opinionated ramblings. So today I am going to address the issue of pain. Pain is a common problem for CFS/ME sufferers and an even greater problem for Fibromyalgia sufferers who are more at the pain end of the CFS/ME/Fibromyalgia spectrum. Generally CFS/ME is characterised more by fatigue and Fibromyalgia more by pain.

I’ve been quite fortunate when it comes to pain. Most of my pain symptoms have mostly disappeared as time has passed. In the early days of my CFS/ME I suffered a lot more. Some of what I have to say here is personal experience, but the vast majority is knowledge from my pharmacy training.
 

The pain symptoms often found in CFS/ME include:

• Muscular pain, joint pain and severe headaches
• Painful lymph nodes (small glands of the immune system)
• Stomach pain and other problems similar to irritable bowel syndrome (IBS), such as bloating, constipation, diarrhoea and nausea
• Sore throat 

Fibromyalgia patients have additional pain, often all over their bodies and they can be extremely sensitive to pain, or feel pain from things that wouldn’t normally be painful.

Pain is an extremely difficult thing to quantify. It’s very subjective; you can never compare your pain to someone else’s. In some ways it’s not the level of pain that matters, but how you perceive it. There have been lots of interesting studies about pain, and one of the experiments that illustrates this you can try yourself (if you wish). Many studies have shown that if someone immerses their hands in ice cold water they will be able to tolerate the pain from the cold water for considerably longer if they are distracted by things such as complicated calculations, or word games, although all sorts of distractions will do the job. People tend to perceive their pain as less if they are not focussing on it.

Some people think that treating pain is a waste of time. How many times have we been told something along the lines of: ‘Pull yourself together it’s only a bit of pain’. But this attitude can be potentially damaging. Ideally pain should be treated and minimised. Pain that is left untreated for long periods of time can develop into a chronic (long term) problem. There are plenty of examples of people with broken limbs who had pain that wasn’t effectively treated. As a result, long after the bone had healed they still experienced pain. This is thought to be due to the nerves becoming so used to sending pain signals that they continue to do so long after the cause of the pain has healed. But it is an area that is not well understood. I’m not saying that if you don’t take painkillers when you have a headache it will never go away. But it is worth bearing in mind that it pays to be honest with healthcare professionals about how much pain you’re in and whether the methods used to treat your pain are working.  Although sadly some people have untreatable pain, there is no benefit to putting up with it if it can be treated.

I was going to talk about all the different medications and alternative therapies that are available to help treat pain, but I think I am going to have to do several posts on this as I’ve already written quite a lot. So next time I’ll do a breakdown of some of the medication available and how effective it’s likely to be.