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.