Thanksgiving

In the spirit of Thanksgiving, which many of the Americans I follow and who follow me on Twitter are celebrating today, I thought I'd make my post  for today Thanksgiving themed.

You may wonder what I have to be thankful for considering I have MS, but I don't look at it that way and think I have a helluva lot to be thankful for. As I always say, it could be worse! 

When the idea for this post popped into my head, I didn't want to make a list, so have been thinking of a funky way of presenting all the things I'm thankful for. Well, here goes!!

MS may be in the centre of the bubbles, but that's just to make it look pretty. The main thing I'm thankful for is my family. They help in more ways than they'll ever know and I appreciate it so much. Thank you.

Perhaps take a moment today to think what it is you're thankful for. You may just surprise yourself with what you realise!

Laughter Is One of The Best Medicines

I was chatting with my mum today and tried to say 'predictible', but my MS kicked in and all that came out of my mouth on several attempts were sounds akin to, "ppppppp.... prprprp..... pdppdpdp..... prick!" Rather than allowing it to upset me, I simply burst out laughing. I sounded like Arkwright in Open All Hours!! I finally managed to say the word and forgot the rest of the point I was making! Again much laughter. Earlier tonight on Twitter, Damon was considering going to see a funny movie and I pointed out laughing releases endorphins and increases seratonin levels in the brain (smarty pants that I am). Seems there's a common theme today, so thought I'd make it my post for today.

MS is an autoimmune disorder and there are various theories on how to treat the immune system (which I shan't go into at the moment), but I personally feel that my immune system isn't overactive; it's simply 'wonky' and needs looked after in order to function at some level of normality. Apart from all the other benefits of laughter, it boosts your immune system (all will be explained!).

And now for why laughter is such good medicine!

Laughter operates on biophysical, biochemical and bioenergetic levels. By the physical process of laughing, you move lymph fluid around your body. Lymph fluid boosts your immune system and cleanses your organs and tissues of waste. The lymphatic system doesn't have a 'pump' to move the lymph fluid around - muscles do this - therefore laughter is a perfect way to move lymph fluid, and very enjoyable!

As I mentioned above, laughter also increases seratonin levels and produces endorphins. Serotonin is a natural antidepressant and can help with anxiety levels and depression, and also regulates sleep and apetite. Endorphins act as a natural pain reliever. Both of these would come in pretty handy for we MSers. 

Laughter also increases the level of oxygen in cells and organs. When laughing, you inhale rapidly and deeply, similar to hyperventilating, and take on board large levels of oxygen. Some use oxygen therapy for their MS; perhaps laughter could be just as good?

A good, hearty laugh relaxes the body and relieves physical tension for up to 45 minutes afterwards.

Laughter boosts your circulation. As you increase your oxygen intake, it is distributed around your body and you also get a mini workout - your abdominal and facial muscles work hard.

As laughter improves the function of blood vessels and increases blood flow, it can help protect against heart attacks and other cardiovascular problems.

Finally, laughter is contagious: it brings people together and shares a good feeling. It also enhances team work, attracts others, defuses conflict and helps to strengthen relationships.

All of these benefits of laughter seem to have a link with MS in one way or another. And lets face it - MS isn't always a barrel of laughs, but it helps to have a sense of humour about it.

Above all else, laughter makes you feel damn good and is fun, so go ahead and have a good laugh.

Thanks to the reference articles:

http://www.helium.com/items/977637-natural-ways-to-increase-serotonin-and-endorphins
http://helpguide.org/life/humor_laughter_health.htm
http://www.naturalnews.com/007636.html

The Good Points of Having MS (Yes, There Really Are Some!)

From the moment I developed Optic Neuritis I knew I had MS, and if I'm honest with myself I suspected I had MS before that. As soon as Optic Neuritis was confirmed, I accepted my MS and embraced it. This may sound like an unusual reaction, but being angry and upset would in no way help. I may have embraced and accepted my MS, but that doesn't mean I'm not going to fight it every step of the way with all of my being - I am, but I find it affords me the ability to explore my options rationally in a precise manner. MS is a complicated and intricate disease, and the treatment options for it are vast. Comparing and contrasting these and also doing reasearch, takes a lot of time but is more than worth it; it provides you the strongest platform possible to fight the disease. Without knowledge, you cannot fight and manage MS, and acceptance goes a long way towards allowing you to approach the fight logically.

MS may be a pain the arse, but there are also many good points to having MS. I noticed a lot of grumblings in my blog, so felt it was about time I highlighted the good points of having MS and explained why in many ways I'm glad I have MS. Glad is probably a rather inappropriate word, but it's the best I can come up with! I'd rather be glad I have MS than think "why me?" because, truly, why not me? I don't have the right to complain, and I'd rather divert my energy to fighting my MS than to self pity. As the song says, always look on the bright side of life.

And now for the good points!!

I never before realised my true potential: before I was diagnosed and started my fight, I didn't realise I had it in me to write a blog, help in a very small way to campaign for LDN to be trialled on the NHS, stand up to my Drs and try a new treatment, and take my MS treatment into my own hands. I'd never have organised a social gathering of strangers (the Meet.ms event on 3rd December) either. I've always known my inellectual potential, but to discover what I can thole (old Scottich word) has pleasantly surprised me. People call me brave, and commend me for laughing at a lot of the bad points of my MS, but truly, there's no other way to deal with it in my opinion and I don't see myself as brave, only as carrying on as best I can and making the most of a less than favourable situation. I've learned how strong I can be as a person, and how much potential I have.

I now have a purpose in life: I've generally floated through life indulging my whims and feeding my brain without much particular purpose. I now realise it is to fight my MS, raise awareness and help others with MS in any way I can. Since my diagnosis, it's as though a fire has been lit below me: I've started a blog, joined Twitter and tweet about MS, LDN and general nonsense, have promoted the petitions for LDN to be trialled on NHS and am attempting to arrange the Meet.ms night out on the 3rd December. Never before have I felt so focussed, and it's rather nice.

I've met so many wonderful and lovely people since my diagnosis and foray into the world of Twitter, blogging and MS sites. From advice and medical advice to help, support, giggles, good chat and people to chat about symptoms with who understand, it's been wonderful and I thank all the lovely people - you know who you are! I'd never have met these people had I not been diagnosed with MS, so for that I'm grateful.

I laugh more now as a result of my MS - I can't do anything but laugh at the various medical issues I have and the situations I think can't get any worse, then often do. I may also have discovered I have some rare moments of wittiness!

I've also learned happiness is much easier than I thought - little things used to get me down, now I realise life is much more simple and my happiness is what I make it. I take nothing for granted now and am happier as a result.

Overall, I'm a happy bunny and glad I have MS for all the above reasons and many more. It may sound strange, but I think it's best to make the best of a bad situation and remember: things could be worse!    

Shift.ms

Still suffering from a chest infection and not sleeping much as I cough when I lie down so doing a rather impressive impersonation of an insomniac! Relapse is still in full force too. Unfortunately also still off work at the mo as I'm too sick to go in. Starting to climb the walls! Keeping positive though. Quick post tonight as I'm very tired, but wanted to write about a new site I found recently through Twitter for people who have MS and an event I'm arranging - Meet.ms.

http://www.shift.ms/ is a community for people affected by Multiple Sclerosis. Users can share, support and interact with each other throughout the site. I've found it great so far and am planning to get sticking my stickers shortly and taking pics (go to the website to find out what that is ; ) ) You can follow them on Twitter @shiftms

Meet.ms event - Glasgow Thursday 3rd December

Muggins here has decided to arrange the Glasgow Meet.ms event where we MSers can meet, have a few drinks, some fun and great banter and find the daftest places to stick stickers and snap them. I haven't decided on the venue yet, but it'll be wheelchair accessible and serve booze and soft drinks! I'm looking at a time in the early evening probably as I'll be at work during the day and don't have any leave left until next year. If you want to come along, drop me a line in the comments section or @ me on Twitter @tartan_miss. Or even better, join the switch.ms website, create a profile and message me on there!! It's a great way to get out, meet new people, have some fun and share experiences.

There don't seem to be a lot of profiles in the Glasgow area at the moment, so the more that are added, the better!

If you're not from near Glasgow, you could arrange your own event, and there are already some planned in Leeds and Newcastle.  

Some good MS / LDN related people to follow on Twitter (yes, it's confirmed - I'm a Twitter geek!) : georgejelinek, aniaArt, MSViews_andNews, LD_Naltrexone, LDNRTrust, mssocietyuk, jsmackenzie, MSRC, Squiffy2, LisaEmrich, gotbrain and AnnPietrangelo.

Something to make you giggle: 10 ways to annoy your doctor - http://getbetterhealth.com/ten-ways-to-annoy-your-doctor/2009.11.09

Still taking my LDN nightly too! Very excited about the potential it has : )

Jehovah! Jehovah!

There's a fabulous sketch by Monty Python where a little old man is due to be stoned to death for saying a fish was fit for Jehovah, and says "Jehovah" again whilst waiting to be stoned. The crowd are shocked, but he says, "It can't get any worse!" (My very abridged and rather dreadful retell).

I think it sums up rather well my predicament at the moment - things can't get much worse. Having taken my steroids like a good girl, they've lowered my immune system to the extent that I now have a chest infection from a cold that started on Saturday night / Sunday. Dr has signed me off work for the week and given me Amoxicillin for a week to try and shift the infection. I've also been given a Ventolin Salbutamol inhaler to help my breathing (which is downright awful). Still feeling awful and breathing is rather difficult. Can't sleep either as I cough as soon as I lie down and can't get comfortable. After the steroids, my relapse doesn't seem to be getting any better either. Needless to say I'm not a very happy bunny.

On the upside, I had an appointment with my MS nurse today for another bladder scan and had 416ml prior to 'piddling' and 97ml retained after, which is an improvement on last week and also under the magic 100ml : ) Going back for another scan next week, and if I retain less than 100ml again next week, they'll be able to give me meds for my bladder problems and I won't have to be referred to the continence service. Fingers crossed.

Still taking LDN every night since I stopped my steroids, so hopefully it'll begin to have an effect soon.

No energy at the moment, so just a quick post. Will keep you updated.   

Positivity!

My posts may have been a little downbeat of late, but I'm still keeping my positive head on and fighting this relapse as much as I can. This blog does become a sounding board for my thoughts and feelings at times, but I try to keep it as honest and true to how I'm feeling as possible to properly convey the 'journey' I'm travelling.

Relapse has gotten even worse today and the steroids are playing havoc, but hopefully they'll help in a couple of days. Last dose tomorrow and then back onto the the LDN Sunday evening. Can't wait! I'm so excited about the potential of LDN and hopefully I'll be able to take a sustained course without any more meds getting in the way (grrrrr). Temperature is a little raised but not quite a fever, so hopefully no infection and I'll be picking up in a couple of days. Think my thermometer will be seeing some action in the next couple of days! Muscle spasms and nerve pain were hellish last night and today, but the TENS machine helps with the leg spasms. The 'band' / 'hug' is back with a vengeance too.

All the relapse nonsense aside, I'm reminding myself this is but a temporary situation - I don't know how long it'll last, but it will pass. I'm still working, but it's one helluva struggle and getting harder every day. However, it keeps me going and stops me moping around in the house and feeling sorry for myself. Fighting my MS and keeping positive will hopefully help.

Just a quick post as I'm off to curl up in my PJs with my duvet and have a nice relaxing evening.

Feeling Dreadful But Trying To Battle On

Day 3 of the Methylpred. and feeling pretty dang crappy. Never taken oral steroids for my MS before, but I'm sure it's all pretty normal. The tablets taste absolutely foul - 5 all at one go - and I have a horrible bitter and metallic taste in my mouth constantly. Feel generally in poor health in addition to the relapse nonsense. Just 2 more doses to go, woohoo! Keeping an eye out for oral thrush, which my nurse warned me about - fingers crossed I don't get it! Unfortunately, symptoms haven't lessened any yet, but perhaps I'm looking for too much too soon. I'd read steroids generally increase appetite, but they've killed mine unfortunately.

As far as my symptoms go, walking is still mighty difficult and my legs are very wobbly. Knee buckling has gotten worse with this relapse. The FES has made a difference though, and I'm not worrying so much about my toes catching and falling over. Fatigue is very bad at the moment, and it's almost impossible to work through - it's as though a fog comes over me and I can barely think or function. Due to the nature of my work, I can take my time with tasks though and have a notebook I use to help me remember tasks to do. The nerve pain shooting down my right arm and into my fingers is still very painful and intermittent and I'm continuing to run to the loo frequently. Balance is still off and drifting a little as I walk (thinking of getting an 'I'm not drunk' badge!). 'Phantom pain' as I refer to it, is driving me berserk! My body hurts, rather badly, in areas and it's frustrating, especially when I can't take Ibuprofen as I'm on steroids. Cognitive abilities remain reduced, and I'm getting confused rather easily. I managed to say 'England' instead of 'Edinburgh' and was convinced I'd said Edinburgh! My speech isn't the best either - having to enunciate my words more in order to speak clearly. For someone with a high IQ, it's extremely frustrating and a little distressing if I'm honest, but I've been referred to the neuropsychologist the first week in December to test my cognitive functions and tackle any areas affected, and finding strategies to help me cope with the changes.

Had a bladder scan last night and the news wasn't great: my bladder contained 171ml of urine, and after 'piddling' (as my nurse calls it) I still had 126ml in my bladder. Anything over 100ml left isn't terribly good. I've to go back next Thursday for another scan in case it's my relapse making things worse. If I still retain over 100ml after 'piddling', I'll be referred to the continence service and intermittent self catheterisation may be needed. Oh, the joys! I take a cranberry supplement every day and do all I can to look after my bladder as I'm very prone to cystitis and had an awful urinary tract infection last year. Still, I'll manage whatever my MS throws at me : )

Rather impatient to recommence the LDN once I've completed the steroid course, and this might improve my symptoms. And I have the Copaxone to start probably in January sometime too. Looking forward to both.

Finding it a little difficult to keep my spirits up - took me 40 minutes to walk to the bank and back at lunch time today, which usually takes 10 minutes at the most each way. Have to leave the flat earlier in the morning to get to work on time too, although thankfully I don't have a long walk. Amazed I'm not off sick from work, but I think I'd get down if I was in the flat all day. It's far from easy - extremely difficult in fact - but I battle on. I generally catch a taxi home as I'm worse by the end of the day. Walking, severe fatigue and cognitive functions are making it difficult, but luckily I have a great boss who's very understanding, especially with all the time off I've had for hospital appointments recently. Not physically capable of taking part in my tai chi class tonight, so didn't go, which I'm disappointed about, but sometimes one has to recognise when not to push too hard.

Down beat as this post may sound, it's not all bad; I'm managing to keep my chin up and I'm determined to fight this as much as I can and keep going. It's extremely difficult, but I do like a challenge! ; )

Steroids

Pharmacy ordered my methylprednisolone last night for me to collect this morning. I was prescribed 500mg per day for 5 days. Tried to collect it this morning, was left standing for 40 minutes (not easy in my current condition I can tell you!!) was then informed they couldn't give me the tablets as the dose was very very high and they wanted to check with my GP the rx was correct! Why this wasn't picked up when I submitted my rx last night (or even this morning when the tablets arrived and they looked at my rx again, I have no idea!). Exhausted, I limped off back to work to return at lunch time when they'd confirmed with my GP - you guessed it - the dose was correct. I submitted a complaint to the pharmacy. I understand they have to check very high doses (apparently the maximum dose, according to the pharmacist, for methylprednisolone is 40mg per day in usual cases. My anger came from having to stand around when they knew my current condition, and that the query with the dose wasn't picked up sooner. Not a happy bunny at all.

Started the methylpred. today in conjunction with a 'gastric protector' - omeprazole. 5 foul tasting methylpred. tablets and a horrible taste in my mouth. Hopefully they work though, then I can get back to taking LDN. No change in symptoms yet, but it's too early for that. Maybe by tomorrow evening if I'm lucky. The list of side effects is horrifying, so stopped reading them. Was checking for my boss in case there were any she needed to know about or look out for. Apparently persistent hiccups are common in high doses. I really hope I don't get them or I think they'd send me round the bend! 

Lesson learned - if I need this dose of methylpred. again, ask GP for an accompanying letter stating dose is correct!

Another new symptom from the relapse - shooting, burning pains down my right arm which are nerve related I think.

Bladder scan tomorrow. Exhausted after today.

FES

Still feeling pretty awful at the moment, curled up in my PJs with my duvet. Collected my steroid rx from my GP today but no pharmacies stock it! Wasn't a terribly happy bunny. Pharmacist at Boots was really helpful and ordered it, so will be available 0930 / 1000 tomorrow. Have to take a 'gastric protector' for a fortnight too to protect from gastritis and gastric ulcers. Oh, the joys! On 500mg of steroids orally per day for 5 days; apparently that's quite a high dose, but I have no idea.

Now to explain my leg stimulator: I've now discovered it's called FES (functional electrical stimulation) - thanks Squiffs : ) The MS Trust has a great factsheet on it which can explain better than I can - http://www.mstrust.org.uk/information/publications/factsheets/fes.jsp  A quick cut and paste,

"In MS, damage to the nerves in the central nervous system prevents or interrupts messages passing to or from the brain via the spinal cord. One of the problems this poor transmission of messages can cause is dropped foot. Dropped foot is the inability to lift the foot and toes when swinging the leg forward during walking. This causes the toes to catch or the foot to drag on the ground, which can lead to falls and a loss of confidence.

Some people will compensate for the effects of dropped foot by altering the way that they walk. In time this can lead to further problems such as pain in the hips or lower back, a tightening of muscles and poor balance.

FES compensates for the interrupted messages from the brain by applying an external stimulus to nerves. Self-adhesive electrodes are placed on the leg and connected to a small stimulator, which is about the size of a pack of cards and can be worn on the belt or carried in a pocket. Small electrical impulses are used to excite the nerves that supply affected muscles producing basic but useful movement.

The impulse is activated by a pressure sensitive switch in the shoe, causing the foot to tilt to the correct angle when lifted. When the foot is placed on the ground again, pressure is reapplied to the switch and the stimulation ceases."

The FES is working pretty well and I've been experimenting with the intensity of the stimulation to find which level moves my foot best. Feeling more confident walking but it's still a chore. I've also gotten used to the sensation as the 'shock' is delivered, which has helped. A little unsettling at first, but I'm surprised how quickly I've become accustomed to it. The only downside is the control box beeps when I turn it on and off, which attracts the occassional look, but I don't really care as it helps me. I'm sure I'll find a way to deactivate the beeps ; ) My papa was an engineer (long standing family joke). Cognitive abilities are still impaired by the relapse at the moment, muscle spasms hurt like hell and the fatigue is killer, but keeping positive.

Bought a TENS machine the other day to help the muscle spasms and it's great! Doesn't completely stop them but does help reduce the pain and intensity. Got it from Lloyds Pharmacy - £29.99 for a dual channel heating and massaging unit.

Had my last dose of LDN last night until after the steroids as I start them tomorrow : ( Will start again as soon as the course is finished. Off for a bladder scan on Wednesday, fingers crossed they can do something to help. Needing the loo every 20 minutes is wearing thin now!

Off to sleep now. Will keep you posted when I'm up to it.