Morning all. It is 7.42 on a damp Sunday morning as I write this. I have been awake since 5.30 a.m. due to Lottie undertaking football drills or should that be mouse-ball drills around the bedroom and landing with a dishevelled and terrified rodent. It finally keeled over at about 7.11 when I decided I might as well get up as Lottie was clearly now hungry. All that fitness training makes a girl starving. The mouse wasn’t quite as peckish apart from perhaps desiring an oxygen tent or a CPR intervention. It is now resting quietly in a shoe box. (aka dead as a ……..mouse).
So with Earl Grey on the go and a husband still soundly asleep I thought I should update my poor neglected blog. Let me start away from the toe for a change. The good news is that there is some harmony slowly returning to the cat household. Whilst I can’t say that the grown ups have wheeled out the welcome wagon and embraced the new arrival with open paws they are certainly mellowing. They now all play outside quite happily, and have started to accept eating in the same room and walking past each other without a major fur flying episode. Lucas still needs to reign in the tendency he has to chase after Boris, show him his tackle or try to mount Lottie but he is getting there. It is helping that when out, Lucas is developing his own areas of “interest” so he has some trees he like to run up, hang off and fall out of. He has a few favourite “holes” in the grass opposite and now ventures further afield (literally) in his bid to experience all of countryside life. I am cautiously optimistic that eventually all will settle down. Thank you to everyone who helped in the process with practical tips and words of encouragement! It would be terribly sad to give up on the little monkey and he does seem to love living here. My little black ninja is definitely a softie under that sleek black exterior and sharp teeth!
On to the foot….ahhhhhhh the foot. Sometimes I have a dream that I have a normal foot. Then I wake up! But as Kay pointed out in her comment on my past blog entry there is so much to appreciate in life and sometimes you have to just realise that you’re not that badly off in the grand scheme of things. Doesn’t stop the down days though and the feeling that just for once you’d like to not feel like you’re walking on a sensitive mound of eggshells under some of your toes. I can only say that Reggie has been up and down. I think I have been having a few more down periods with him than up and he has started to experience some really deep, shooting type pains. I cannot get the red swollen sphere over the knuckle of the former joint to abate and when it starts throbbing the rest of the toes follow in quick succession. It is hard to establish what is CRPS and what is the effect of surgery. Given that it seems much worse when it rains I think there is probably some link to the hardware in there and ongoing inflammation. That is the problem with CRPS; there may be perfectly normal residual inflammation after the extensive work done on the bones. But CRPS senses this, reacts and creates MORE. Agh!
I have been doing some interesting research on the net into this whole business. When I was first diagnosed I read a lot of “support” group threads. They were terrifying. People with “whole body CRPS” and the inability to walk. People on morphine, in wheelchairs and with spinal cord stimulators. OMG. So I made a deal with myself to leave such sites well alone. However I decided to try to find some positive stories and also look at some research into why it happens and how it might be helped outside of the conventional nerve blocks and so on. No way is anyone stabbing my spine with a large needle thank you. I may not ever have odds in my favour for a good thing such as a lottery win but given my propensity for medical complications I would be that millionth percentage that ends up paralysed. So, thanks but no thanks Mr Stabby Needle man.
Which brings me to non surgical interventions. The first one is HBOT. This may sound like a Star Wars robot or some diverse beauty treatment but is in fact hyperbaric oxygen treatment. Basically you go sit in a decompression chamber akin to that which divers use and get taken to different “depths” over a series of sessions. Unfortunately I don’t think you get the fish to photograph or the warm lapping waters of the Maldives. The theory is that by doing this, oxygen floods the tissues and allows repair, recovery and reduction of inflammation. Little formal evidence exists to support it with CRPS but one study in America showed positive results and remission of symptoms in around 40% of CRPS people having multiple sessions. That is better stats than nerve blocks! You need a LOT to have an effect, upwards of 20 sessions of around 90 minutes each. In the UK chambers exist at several multiple sclerosis charity support centres as it has been shown to be effective in managing the symptoms of MS. There is one relatively close to me and I am in contact with them to establish if they feel they can help. Watch this space (and watch my ears pop!!)
Secondly I have found a few anecdotal web reports of people who have had CRPS and who have got it under control. In fact one individual refuses to discuss control or remission and says it can be got rid of. He says you don’t remiss a broken leg do you, and then if you break it again say it has come out of remission? I can kind of see his logic and it is a positive way to construct recovery.
What do these anecdotes discuss then? Do they advocate burning clumps of hemp over poor Reggie whilst chanting incantations from Peru and only eating mung beans and guinea pig? Do they recommend buying pink Crocs, soaking poor Reggie in reconstituted snails and porcini every night and rubbing him with cabbage leaves? No. Although I have found reports that cabbage leaves are actually good as natural anti inflammatories so perhaps I will craft him a winter sock out of a trend setting mix of red and green leaves. And the pink Crocs….well, if you’re going to wear them they should be pink….
No, these reports talk about a variety of options. Two of the key ones seem to be using DMSO and NAC. Yet again my acronyms run away with me. When I read these I thought I was on some form of “Introduction to computer programming for the surgically challenged”. DMSO is actually Dimethyl sulfoxide, an organosulfur compound with the formula (CH3)2SO. There you go. Its used as an industrial paint stripper. What is suggested you do with the appealing DMSO? Rub it into your CRPS affected bits. OK. Well, probably worth a go and unless you’re shoving it on neat it is unlikely to burn your skin off. Immediately. You can’t buy DMSO in Boots. Instead you can get it online and it arrives cellophane wrapped and with the disclaimer “This is not intended for medical use” despite being promoted on the website as a great anti inflammatory and helpful to a range of conditions. I guess they don’t want to be sued if your limb drops off or spontaneously catches fire or looks like a failed Homebase advert. Anyway I got some, and I on Day 3 of application. So far Reggie hasn’t dropped off. I’ll keep you posted.
Reports also discuss NAC. This is N-Acetyl Cystein. This is an anti-ageing nutrient and helps to detoxify the system. N-aceytl cysteine supports the function of the liver and protects against environmental pollutants. This is one of the few amino acids to contain sulphur, which helps in the production of collagen and promotes proper skin elasticity and texture of the skin. It has nothing to do with Michelangelo and a paint brush. Why do all roads seem to lead back to painting? Oh well, at least I can help him out with his brush cleaning at the end of the day should he need it. NAC is on order from Holland and Barrett. They don’t seem to actually have it in store around here which is highly helpful.
In addition to my acronym filled treatment plan I shall be purchasing some Epsom Salts as they are also indicated as beneficial to the CRPS limb either in the bath or as a kind of damp “wrap” that you stick your foot in for 45 minutes or so. Vitamin C is also indicated and of course that never does nay harm to boost in your system. Finally magnesium citrate is mentioned but I don’t want to overload poor Reggie with all these things so I will stick to the two key recommendations and see what happens. Short of my skin falling off I don’t think I can do much damage with trying some alternative methods. In honesty even industrial pain stripper is probably way less toxic than the combination of prescription medications that rattle around in my handbag.
On that note I must say I bought myself a handy little daily pill organiser from Boots. Since my memory has turned into that of a goldfish I found I couldn’t recall taking my tablets. Not helpful. So, I now fill my little pods with my pills and have a structured way of seeing what I have taken and when. Perfect you may think. Yep, it would work really well if I a) remembered to actually look in the organiser and b) take it out with me. Is it disturbing that my job involves assessing individuals with cognitive deficits?! Honestly I am enjoying being back at work a few days a month but the brain power and concentration it takes to get there, be alert and on the ball with them for 3-4 hours and get home usually leaves my brain and body feeling like it has completed a combination challenge of Ironwoman and the Krypton Factor. Perhaps I am getting old.
So, I shall sign off. One of the other suggestions was removing caffeine. The jury is out on whether I can do that. I do LIKE my coffee. I have more or less removed alcohol apart from a beer or glass of wine at the weekend. Also removing Diet Coke was another suggestion, even the caffeine free variant as the aspartame is toxic. Blimey, taking away my Starbucks and Diet Coke might just render me a miserable old hag. So, I shall go and get the bean to cup machine fired up and work on my HBOT, DMSO and NAC regime instead for the time being….
TTFN. LOL. x
PS For those craving more information (Danger Kay!!) some links below…
Oh and finally……just to show how BIG the kittie is getting!