... But That's Not Me

 Greetings,

Funny thing, this started as a Facebook (FB) post, but it grew into something more worthy of a post on my blog, and I have posted so infrequently on this blog that I decided that it was time that I started again, at least on a more semi-regular basis. Before I get to the nitty-gritty of the current situation, I had my second Pfizer shot, with much the same resulting side-effects as the last, i.e. a week-long flare of my fibromyalgia (FM) symptoms. You can read the previous post if you want details. I still think it is worth it; COVID and the potential long-term side-effects would be much worse. Anyway, enough of that stuff, it's not actually why I am here today.

Like this blog I occasionally post some things on FB to raise awareness about FM, these are primarily images which I share from sites across FB. These are not cries for sympathy, I don't want sympathy it does me no good whatsoever. Sympathy is a salve for the individual who gives it. It makes them feel better. Sure it makes the other person feel better for a little while, but it is like giving painkillers to fix a broken spine. They take the pain away briefly, but the spine is still broken; and the painkillers become addictive and begin losing their effect after a while.

Empathy is a little more useful, though I find it difficult to understand how a person who does not have FM can empathise with a person who does. "Empathy is the capacity to understand or feel what another person is experiencing from within their frame of reference, that is, the capacity to place oneself in another's position." as defined by Wikipedia. How can a person "feel" what the person with FM feels every day, what they experience? Empathy is a long stretch in my opinion. Understanding, now that is a possibility, even if it is described through the particular lens of the individual, that will do nicely. Understand that we have our good days and our bad days. Understand that the symptoms are annoyingly random. Understand that it is like a roulette wheel as to whether tomorrow will be a good day or not. Further, understand that people react differently.

Returning to my original position, I post the images because they often do a good job explaining some of what I experience, however I dislike reading many of the comments because they do not relate to me. It's one of the reasons that I have not joined a support group in the decades since I was diagnosed. I have run into people who have FM and there tends to be two types. 

The first type allows their condition to rule their lives. It is the explanation for the reason why they don't do things. FM is the reason they don't or can't go out and do things. FM has ruined their lives because their body will not allow them to do things, because it hurts. They do things and it causes them pain so they don't do them anymore. They focus on the negative.

The second type understands the effect the condition has had on their lives, but pushes against those boundaries every chance they get. They go out and do things regardless of their condition; in some cases deliberately in spite of their condition. They push they pain to one side so they can go out and do things, and find that while they are doing them they don't notice the pain. They push their limits, and pay for it, and then go out and push their limits again, and again. 

The problem is that most of the responses to the images that I find are from the first type, and I am certainly from the second type. I want to find out what I can do, and keep on doing it. I don't want the spiral of ever-reducing capacity. I want to get out there and keep doing things.

I thought about responding to the comments, to show these people that there is hope, but you have to find it within yourselves rather than go looking for it elsewhere. I thought about arguing it from a philosophical point of view, pointing them toward the Stoics for a better way to live. The Roman emperor, and Stoic, Marcus Aurelius suffered from chronic illness. His Meditations as we know it now has passages about pain and illness, because he suffered and responded. I thought about even pointing them toward Nietzsche who also suffered from chronic illness throughout his life, pointing them toward his "will to power", but I wonder what the responses would be. 

Instead, I write to you, my dear reader, explaining how these people are not me. They do not represent everyone with FM; we have not all lost hope; some of us do not live our lives in little balls of pain shutting the world out complaining about all the pain, we have lives to live. The only way to change your life is for you to change your life. Take a different perspective. Change your thought patterns. Don't wait for the miracle cure that may or may not happen. This is your life, go out and live it.

Cheers,

Henry.

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The List: I am here.

Greetings,

So people often ask me how I am doing and what's going on with my health. I usually give the short answer that "I am fine." or that "I am doing OK." For the most part, at that point in time when they ask it is mostly the truth. I don't usually tell all of the truth because it would take too long and would feel too much like complaining in my books and I just don't like doing that. I tell people for empathy not sympathy, I tell people for explanation of what's going on and not much more.

Just for a change I figure I will give some detail as to what's going on with me and give "the list" of various bits and pieces which are going on with me at the moment, and I would not be surprised if I have missed some in the process of making this list. What will be noted is that some of these issues are a daily issue for me and some of them are just irritations which emerge to annoy me every now and then.

1. Fibromyalgia (FM)
No surprises here. I would not be writing this blog if it was not for this condition. It is the one which causes the most issues most of the time. All of the issues impact upon this one and this one impacts upon all of the others. If it relates to pain it can be related back to FM either making it worse or better, usually worse.

2. Sarcoidosis
Update: As of late 2019 this is gone. No presence of it found in my liver as of last scan. Lungs seem to be relatively clear as well.

3. Osteoporosis
Update: As of late 2019 this is gone. The last Body Mass Density Scan said everything is back to normal.

4. Adrenal Suppression
Our good friend prednisone also caused adrenal suppression meaning that my adrenal glands are a little slow to respond to infections. The other symptoms of this one are tiredness, abdominal pain, low blood sugar and other irritations.

5. Coccydynia
"Tailbone" pain. Seems that somewhere in my exciting childhood I did some damage to my coccyx. The result is that I have issues with sitting for an extended period of time, and also rising from a seated position. There are lots of nerves which are connected to this area.

Update: after waiting on the public health system for a period of time, I finally got a coccygectomy, i.e. they removed the offending broken tailbone on 8 September 2022. I am gradually improving, some of the tailbone pain remains, but nerves are finickity things in their healing process. I am optimistic that I will eventually be able to wipe this one out as well.

6. Neck (c5-c7)
This one is a real issue as I get numbness in my fingers on both sides, though for some reason my left is definitely worse than my right. The pressure here seems to be sitting on a nerve connected to my elbow, which is not helpful, though the scans say that it should be affecting my right not my left. Probably the FM screwing things up again.

7. Gastro Oesophageal reflux disease (GORD) and Irritable Bowel Syndrome (IBS)
Lots of fun with eating and digesting of foods. I have been on various different diets to attempt to improve the situation with these two, they help mildly but not so much as how much I enjoy eating what I like. The IBS is also very much connected to FM as well which is not very helpful. The GORD is also related to stress, and with this list there is no surprise that I have a little issue with stress. Not to mention that FM causes issues with swallowing.

8. OSA (Obstructive Sleep Apnoea) and CSA (Central Sleep Apnoea)
Most people will be familiar with OSA where the soft palate of the mouth obstructs the breathing passage causing the person to stop breathing, and also causing snoring. CSA is a little more interesting, in this case the lungs just decide that they are not going to work and just simply stop working. The normal CPAP machine will not help with CSA, thus I have a special machine to deal with it which has variable pressure.

9. Plantar Facitis
Seems that I have been walking too much. So now I have special inner-soles for my shoes to stop my feet hurting so much because I won't stop walking. Besides it is my main mode of transport.

10. Peripheral Neuropathy
Another reason for my feet to hurt, I have almost no doubt that this has been caused by the FM indirectly or by my Neck or some other similar nerve-effect. In any case the feet are irritatingly sore and usually for no reason.

11. Migraine
These are finally under control thanks to various medications. I am very diligent in taking the medications which control these because I sure know when I don't.

12. Bone spur in Achilles' tendons
Picked up on an ultrasound when looking for something else, these only really cause me an issue when I have been on my feet for ages. Or when I have been doing lots.

13. Marfans Syndrome
This has given me some physical symptoms, mainly I have hyper-mobility through my joints, which is no help with the FM, and I seem to be still growing. Luckily I do not have any of the heart issues which seem to go along with this condition. The real issue is that I suspect that this diagnosis covered many of my FM symptoms when I was seeking a diagnosis.

14. Arthritis in thoracic spine
I have a little arthritis in my thoracic spine, my lumbar spine is in great condition. This has been causing some chest pains of late which is really annoying.

15. Asthma
The asthma has more or less disappeared. The only time that it ever appears is if I get a chest infection. Once that is cleared the asthma disappears with it so this is really a non-issue. I have not used a puffer in years.

16. Depression
With no great surprise I have some depression. This stems mainly from the chronic pain which I suffer from, but also other issues which are mainly to do with the various conditions which are listed above. It is usually the complications as a result of the conditions which cause the depression. I am not one to complain so I put on a happy face and go on with my life. I am not the sort of person to go into a hole and wallow in my pain and unhappiness of my lot.

The question must be asked as to why I have published this list of issues and mentioned how they affect me. I have done this because people have struggles which we do not know about. Most of the time they are hidden from the world because it is "not the done thing" to present them to the world because the individual seems like they are complaining.

The "R U OK?" Day is one day out of 365 where the question is asked and it is almost a rhetorical question because while people are somewhat encouraged to tell what's going on there is no more. I publish this list to say that "No, I am not OK." and I am fine with this. I have my struggles and I will continue to fight them. I have days where I find things incredibly hard. I have days where I wonder if it would not be just easier for me to just stop... everything. The thing is that I know that there are people out there who support me and who will help me through my trials and tribulations.

I will stand with all of those who are not OK. I will stand with those who are finding it hard. I will stand with all of those who are tested every day of their lives. I will stand with them and say that: I understand that it is hard, I know that you have your good days and your bad. Learn from the bad days; live for and remember the good days. To those who I call family and friends, know that I am here.

Cheers,

Henry.

FM for Others

Greetings,

The idea of what other people can do to help a person with fibromyalgia has been something which has been rattling around in my head of late. This mainly comes from a point of people not understanding what having FM is like and also not understanding about what a person with fibromyalgia really wants in the way of support. In some ways this comes from not understanding the condition itself, but it is not just that.

Dealing with someone with a chronic condition is difficult for others most especially where they do not understand what the person wants. It is even more difficult where the person with the condition is unable to articulate what is going on or what they want. In this way it is really a two-way street in that information needs to be flowing in both directions for real understanding. With this situation in play, it is of little surprise that people get frustrated, on both sides.

So I will start with something simple. A person (friend or family) with FM approaches you and looks like they are not doing well at that time. As well as many of us have learnt to hide our pain, there is still evidence of it present. You ask how they are doing, they give you a list of what hurts and in what way (if you are lucky). Here is where people go wrong, it is not sympathy that the person wants here, they want some understanding and empathy. This is a not a competition for the "Mine hurts more than yours" trophy. You will find that empathising with the person will do a lot more for them than sympathy.

One of the greatest things about FM is the feeling of being alone. When a person empathises with them with regard to their condition, and they can see even a glimmer of understanding, the individual with the FM can see that they are not alone, and will begin to feel better. This is really simple but really useful. Sympathy is like a pat on the head and a pass off to the next topic. Empathy is engagement with another person with a degree of understanding and this is so much more useful.

The feeling of being alone also affects other things especially where it comes to getting support which can aid them. The feeling of being isolated means that many develop tough skins and become highly independent individuals. Used to struggling alone and dealing with what they can. This independence unfortunately also makes it difficult for them to ask for help, even when it is really needed. This is where some of the understanding which was mentioned before becomes even more important.

If it is your first time dealing with a person with a chronic condition knowing what to do and when is hard. This is because it is difficult to understand what is going on with the individual. It is at this time that engagement on your part is necessary, remember the point about empathy made before. Once you understand what is going on it is easier to see the signs where help would be appreciated, even if it is not asked for.

It is surprising but at this point in time, it is where the small things help. Getting an item, or volunteering to do so is helpful. Even if the request is denied, once again there is the feeling of not being alone as indicated above. Many people with FM have issues with asking for help due to some of the stigma attached to the condition, so they will often struggle, or simply do without. Small amounts of assistance go a long way at this point in time. Simple things will all person to understand that help is out there and all they have to do is ask. This may take some time though.

Most of the highly independent individuals will push until they cannot, and even at this point in time will deny help, it is at this point in time if help is denied, it may help to be a little forceful in your approach. Encouraging the help will often break through such stubbornness and make the individual realise that it is okay to ask for help, or even accept it.

This is a rather rough guide for dealing with an individual with FM. It can also apply to people with other conditions also. Many of these individuals will not ask for help, but when it is offered will take it, or understand that they are not alone. Remember it is understanding that these people want, a degree of empathy. Sympathy is a stop-gap measure, empathy and understanding are much more useful and give much more aid.

Cheers,

Henry.