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.

Pain to Power

Greetings,

I know it has been quite a while since I have put anything on this blog, I have been having a lack of inspiration for anything of relevance to write. My fencing blog (afencersramblings.blogspot.com.au) seems to be so much easier to write for some reason. I am guessing that this one is personal and I do not know exactly how much of my personal stuff people want to hear about. I am really not the sort of person who likes to sit around complaining about stuff. I write here to inform and to give others ideas about how to deal with things in their own lives. So on to the subject of the current post before I get too side-tracked...

The purpose of this post is to look at how we can turn our pain into power. No, I am not talking about working a generator, I am talking about using it to motivate and to make us do more rather than withdraw into our shells as we often want to. This may seem very strange to some, as soon as the pain starts they stop because it hurts and therefore the concept that the pain can make them powerful is going to be rather alien to them. Obviously for me, not so much.

"Work through the pain." How many times have you heard this statement? It is often proposed by gym-junkies and the like when they are exercising. They are talking about pain which is developed by fatigue or a "stitch". This is not the sort of pain that people with fibromyalgia (FM) and similar conditions are familiar with. For them it is nerve pain, much more painful, and often longer lasting.

Step 1: Choosing

The first part of turning your pain into power is that when the pain strikes you have two choices. No, actually you really do. You can stop what you are doing, or you can continue. If what you are doing is not particularly pleasurable or you are not particularly motivated to doing it then stopping and saving your energy is probably the best option. Save your energy for battles you want to pick. If you are doing something that you want to be doing or is pleasurable to you and you are motivated to do, then not stopping is probably an option. You have to choose not to stop.

Step 2: Energy

The next bit is having a look how much energy resisting is going to take and how much you have in reserve. Time to "count the spoons" as some would put it. Resisting the pain and continuing is going to take energy, and in some instances it is going to take quite a bit of it. The questions you have to ask yourself are: Do you have this energy? Are you willing to spend it? Are you willing to put up with the consequences of spending it? Is the outcome going to be worth it? The last question is actually the most important as far as I am concerned, the rest are not so important, but that is me.

Step 3: Spending the Energy

Out of all of the steps this is the hard bit and takes the real determination. This is the bit where most people will feel that they have failed, or will quit trying and so forth. This is the bit where you stare the pain down and tell it who's boss. This is the bit where you look it in the eye and tell it that you are going to continue what you are doing until you want to stop, not until it wants to stop you. This is going to take determination and energy to keep going. Most importantly believe that you can do it and do it.

Step 4: Downtime

After any energy expenditure you need some downtime. This will allow you to recharge the batteries a little. At this point in time you should not be thinking about how you went, only about resting and recharging. To tell you the truth, this is the bit that I have the hardest time with, I always feel that I should be doing something. Most of the time for me it is "crash"-time rather than downtime, and I do not recommend it. Take time to rest instead.

Step 5: Evaluation and Preparation

After you have had some time to recharge your batteries you need to have a look at how you did. A responsible person always evaluates what they have done and learns from it. Most importantly, this is personal evaluation. You do not need to, nor should you, compare your successes with anyone else. Please notice that I have not mentioned the word "failure". If you did a little bit more than you would have done because you chose to. You have a success. The successes do not have to be big, the just have to be present. Find out what you can do differently next time to improve your situation so that you can do better. The next part is preparation and preparing to make the same choice again, because it will come around again, and you have to be willing to make the same choice again. The more you do it, the more motivated you will become and the more powerful you will become. Hence pain to power.

If you are reading this and think that this is an easy sort of thing to do, you are kidding yourself. It is even more difficult if you are not prone to resisting the pain and letting it have its way. The method I am proposing here is hard, and it takes time, but it is about standing up and taking power over the pain rather than letting it have all the power. No, I am not saying that you should ditch all your medications, that's crazy, but the power of your own motivation can help a hell of a lot.

I am proposing a method that works for me. Now be warned I am a stubborn sod, any one of my two siblings will tell you this, as will many of my friends. I hate being confined by things. Most of all I hate being confined by my conditions, thus I fight against them. Now a lot of the time this can land me in some hot water, you will not posts about me talking about "crashes". This is because I push the method that I am proposing to the extreme and then suffer the consequences. What I am proposing for you is to use it in a much more measured fashion. Have a go, what's the damage it can do to try?

Cheers,

Henry.