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Post relapse part 2

15/8/17-13/9/17

On the 15/08/17 I started acupuncture weekly (I found a Chinese acupuncturist round the corner from my home). He checks my tongue and pulse before each treatment. On the first visit I had 17 needles in total (3 to my head, 4 to each leg, 2 to each hand and 1 to each arm). On my 3rd visit bigger needles were used as they promote better energy flow. Also different areas were used for putting the needles. However this included the same points to the head on every visit. On my 4th and 5th visit a heat TDF lamp to needles on legs was used. 'A TDP lamp is similar to a heat lamp, however it features a round plate coated with minerals consisting of 33 elements essential to the human body. When the mineral plate is heated, it emits a special band of electromagnetic waves that coincide with the wavelengths and intensity of the electromagnetic waves released and consequently absorbed by the human body. This absorbed electromagnetic energy has been found to yield therapeutic effects on the human body by: * Helping to generate various beneficial biochemical stimuli that the body may lack due to illness or injury. * Accelerating the decomposition of injured structures, such as bad cells. * Enhancing the body's function of adjustment and immunity. With its relaxing, warm temperature, the TDP lamp is very effective for temporary relief of minor muscular and joint pain and improvement of local, superficial blood circulation.' On the 24/8/17 I recommenced hyperbaric oxygen weekly for an hour and a half each time (I have not had this for a year). This helps with various symptoms including fatigue. On the 3rd week I did Pilates for 1 and a 1/2 hours plus 30minute relax and reiki prior to oxygen. I have to say I was aching later but will persevere 😊. I have bought a Smart wonder core machine for full body workout. However so far I have only got as far as looking at it.....1 step at a time haha. On the 13/9/17 I had my post relapse review with my consultant. I have to have an MRI scan with contrast before new treatment can be decided. It should be in the next 6 weeks and consultant referring as urgent! 'Gadolinium contrast media (sometimes called a MRI contrast media, agents or 'dyes') are chemical substances used in magnetic resonance imaging (MRI) scans. ... The contrast medium is injected intravenously (into a vein) as part of an MRI scan, and eliminated from the body through the kidneys'

I am very nervous about this and I have been a bit teary too. I think this is because I have only had one MRI before. This was 13 years ago when diagnosed so quite apprehensive about seeing it! I am going back on my tablets for fatigue and I can double the dose I was on previously to see if this helps. I discussed my vertigo however no medication available for this. Can try stemitil short term but not for long term use or for MS vertigo. Since the beginning of my relapse at the end of July I feel there have been huge improvements. I can walk unaided again which is great as I was very anxious and scared about this. I have no major pain at present, just niggles and stiffness and pain first thing daily which can be managed without pain relief. My vertigo is still on and off but manageable. I am able to drive again and I just need to increase distances a bit more. My fatigue is still very much present, not as debilitating as it was in August but not quite where I would like it! The next blog will be either be back to work update or MRI and treatment review. Hopefully not as long as this one.

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Post relapse part 1

8/8/17-14/8/17

I did write a longer blog however I couldn't post as too long therefore in 2 parts.

The first thing to say is I can walk again unaided. This is so relieving as it scared the s**t out of me when my right leg was completely paralysed! However not even stick needed now inside and outside 😊. Steroids are very effective and you just have to go with all the nasty side effects unfortunately. At least I only take them for 5 days however they are massive doses (500mgs a day). So for a few days following the steroids I think I lived in the bathroom 😂. You pass urine approx 1.5-2 hourly. This is a normal side effect but extremely annoying and tiring! Another side effect when you stop the steroids is aching everywhere. I felt so weak in my arms and legs. Also even though only a short period of not being able to use my right leg I think there must have been some muscle wastage! Low mood consumed me as the steroids worked their way out of my system. I certainly crashed and burnt and my fatigue was so debilitating. This meant naps were needed frequently and even little things were so much effort. Things you would take for granted if you didn't have MS, especially during a relapse. Things such as walking upstairs and having a shower. I did manage a shower daily even though I would put my pyjamas back on. I just wanted some sort of normality! I have struggled with vertigo quite often however luckily it doesn't seem to last for long. It's just very annoying! I seem to have had a lot of headaches too so eating paracetamol like smarties! In addition initially I suffered with a sharp pain on my right hand side of my back in the rib area. Luckily this has subsided for now.

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Day 5 Steroids- Final Day - 7/8/17

The amitriptyline did the trick again last night and I got about 8 hours sleep again on and off. After tonight though I would like to decrease the dose of amitriptyline and ideally stop it all together. This is because it makes my mouth so dry and I feel so dopey the next day so find it even harder to function! Over the years I have always had a lot of complimentary therapies such as acupuncture, reiki and hyperbaric oxygen. However due to various reasons I have not had any this year. I now think I should be looking in to these things again. As Bella starts school in September it would mean I could manage booking these things on a Wednesday (my weekly day off) as well as resting. I had been seeing my acupuncturist Therese on and off for about 11 years initially to stop all pain medication I took. It worked and it also assists further symptoms such as sleep and balance when required. However she has gone abroad to further her acupuncture practices further. I realise there are lots of acupuncturist's around however they do not all follow Chinese medicine principals. This is what Therese did and it meant you were treated more holistically. Therefore I need to do some new research and locate another acupuncturist locally. Symptoms and improvements experienced today:- I managed to get in and out of the shower independently today.......one less thing for Andy to do 😂. The shower did exhaust me though so pyjamas back on straight after. At least I felt nice, clean and refreshed though 😊. I don't need my walking stick in the house now. I did use it outside yesterday as felt safer. This is because my legs are still very weak and my balance is off a bit! Walking stick not in house now My vertigo has been really bad most of the day. It's a strange feeling as I can just be sitting and my heads spinning. Similar to being drunk without the fun of drinking 😳 I don't appear to have as much pain in my legs today which is good. Also the feelings in both legs appear normal again. (Left numb and Right no feeling). This is very relieving as in 13 years I have never lost the feeling completely leaving me unable to use a limb! It actually really scared and upset me! I have been made aware previously by my consultant that following a relapse you can be left with residual damage even if just subtle. This means it is a waiting game and whilst in relapse I always wonder at the back of my mind what damage will remain. On a positive though I think that my feelings in my legs seem to have come back quickly. Also it means that I now think I will be stepped up to another treatment which in turn should be more effective. One of the downsides of steroids and amitriptyline is I just want to EAT! I love my chocolate as it is but definitely worse at present. I have put a few pounds on so definitely serious cutting back post relapse! Well that's my 5 day relapse and steroid blog/diary completed. Hopefully there will not be another for at least a few years. The reason for no blog tomorrow or in the next few weeks is that I expect to crash and burn tomorrow. From previous experience I know this is when the fatigue goes to another debilitating level. Also I can go down in mood with more grumpiness. I am lucky however that Bella is going out with my sister Chloe and her dog Coco (who Bella adores) tomorrow. Then on Wednesday my Mum will pick Bella up and take her out for the day. This means I can just sleep myself better! Only annoying thing whilst relapsing is you sometimes have to cancel things you have pre arranged. I will miss a joint 40th meal/cocktail night tomorrow night. I know Jen, Mel, Heidi, Hills and Linsey understand. I just feel guilty at times but just find it too fatiguing. At the start of my relapse I left millennium square early as was starting to feel nervous about my leg. However with all this in mind I can honestly say when not in relapse (the majority of the time) I do a lot of things I enjoy. I love concerts and football. My number 1 thing though is Bella. Bella keeps me strong and I fight for her ❤️. Right amitriptyline taken (for the last time hopefully). Next blog to follow in a few weeks with progress report then consultant review.

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Day 4 Steroids - 6/8/17

Last night I took 50mgs of amitriptyline as I was desperate for sleep as I had felt so exhausted all day due to lack of sleep. Also I had quite a bit of pain in both legs. The good thing was however that I did get about 8 and 1/2 hours sleep and only woke a couple of times. It would be nice to say I felt refreshed when I woke but I felt really drowsy due to the amitriptyline. Even after I took my steroids they didn't start making me feel wired again till about 3PM. I then feel a bit wired for about 5 hours then I'm ready for more amitriptyline and sleep. Whilst I felt awake Antonia and Colette took me to watch football. I think I just needed a change of scenery although I had had enough straight after the game. I find my tolerance very low as I'm tired and can't be bothered to engage as much as usual as I get brain fog. I find myself getting frustrated as I can't drive, just drink water or juice and I hate feeling wobbly and unsteady on my feet. This in turn means I can't go out by myself and have to rely on others! It's not as long a blog today as I just want to go to bed and have just taken another 50mgs of amitriptyline. I do need to apologise if there are any spelling mistakes in any of my blogs. I can never be bothered to check over them afterwards as I always write in the evening! Symptoms and improvements experienced today:- Right leg has been very painful today. I think this may be as I have full feeling back in it now! This is brilliant for me 😊. However I think cause I did not have any feelings in it for approx 5-6 days the muscles had weakened very quickly. My hands have been shaking today. However we're worse yesterday but I forgot to mention. It's very strange as I sometimes think i probably resemble an alcoholic (shaky hands). On amphetamine (wired and chatty). I certainly don't feel my normal self whilst taking such big doses of steroids and amitriptyline! I suffered with vertigo quite a bit this morning. I used to think this was something you only suffered due to heights. However I was wrong there. 'Vertigo is a medical condition where a person feels as if they or the objects around them are moving when they are not. Often it feels like a spinning or swaying movement. This may be associated with nausea, vomiting, sweating, or difficulties walking. It is typically worsened when the head is moved. Vertigo is the most common type of dizziness. Not to be confused with acrophobia, an irrational fear of heights.' Feeling short of breath this morning which I usually associate with my fatigue so I no longer let it worry me. I just have to take deep breaths and rest till it passes. That's Day 4 completed so bed now to try and sleep then on to final day of treatment tomorrow.

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Day 3 - Steroids 5/8/17

Well I was hoping for another good nights sleep last night. However this was not to be and I only ended up getting about 3-4 hours on and off! This along with my relapse has left me feeling even more fatigued and exhausted today. Therefore the mere effort of walking even a few steps from lounge to kitchen is extremely hard work. I do truly believe that some people that have never experienced fatigue do not truly understand it and how debilitating it actually is. I hear things such as 'I'm really tired today as I didn't sleep well last night'. Tired is tired and fatigue is something completely different. An example would be that you could have a really good nights sleep however you wake feeling exhausted and like you had just run a marathon through thick mud! My MS nurse explained fatigue to me and the effects on an MS patient when I had my last debilitating relapse in 2015. 
Basically due to the lost insulation of the nerves an MS sufferer has to utilise more areas of the brain to achieve the same results of a non MS sufferer. Therefore this fatigues the MS sufferer quicker as it requires a lot more concentration and effort. At this point I would just like to state, I am not looking for sympathy or pity. I would just like to raise awareness and help other people understand a bit about what life can be like with MS. Also I think as this is considered 'an invisible illness', what you see on the outside does not necessarily reflect what is happening on the inside! Anyway I have managed to rest today as Andy took Bella to her martial arts class this morning. Then when they came back, Andy went off to work but my friends Antonia and Colette came round. They took Bella out for lunch, to the cinema to see 'Captain Underpants' then to the park for ice cream and a run about! I did go back to bed after everyone was out but even though I felt exhausted and my body was screaming for sleep, my mind was too active from the steroids. I payed there for an hour when I finally decided I was not going to sleep so hobbled back downstairs to watch Television. One of my mates Laura (of 23 years) then came round to see me this afternoon with her little girl Isabelle (my very cute 19 month old goddaughter). It was nice for a catch up even though I was a bit groggy through lack of sleep. When Antonia, Colette and Bella returned back late afternoon I could have cried. Bella had had a great day and she was holding a bunch of flowers for me and Antonia and Colette had bags of shopping to cook tea 😊. I just had to sit and relax whilst a lovely tea was cooked including a nice chocolate dessert. It's true what is said 'you really do find out who your true friends are in times of crisis'. I really can't thank those friends and family enough for all the support, help, messages and visits I receive whilst unwell and relapsing with my MS. Symptoms and improvements experienced today:- When I got up this morning I noticed I the steroid flush not as bad even though I have felt quite hot today. 
Not quite as chatty today as have felt so mentally and physically drained through lack of sleep. 
Burning pain in my left leg seems slightly better but my right leg aching a lot today. 
Very dry mouth again so lots of water drunk. 
I have managed to move my right foot and leg today. Not perfect and still very weak but more improvement none the less so still remaining positive. 
I am still needing my stick around the house as very wobbly. Also I still need Andy's help to get in and out of the shower. I am still seeing all this as just a short term annoyance/nuisance and I will be back! So that's it for today. I really need sleep now so 50mgs amitriptyline taken tonight and I will be back tomorrow!

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Day 2 Steroids- 4/8/17

I'm pleased to say the amitriptyline did the trick last night and I had about 7 and 1/2 hours sleep on and off. A bit drowsy when I woke but following the next dose of steroids a bit wired and a lot chatty! My gorgeous niece Jessica came over to stay last night so she could drive Bella and myself over to my sister Imogen's (her mum) today so I could rest and Bella could get out and see her cousin's Evie and Ewan not forgetting Hetty the new puppy. We then all went to meet my other sisters Emma and Chloe and my Aunty Sheila for lunch. Jessica parked outside so I just had to stumble through the door with my walking stick! I have never used a walking stick before but I did ask my mum for my Grans walking stick following her passing a few years ago. It is a lovely flowery one and makes me think about my gran (Arabella who was an amazing, strong lady who we named our daughter Bella after). I realised I might need this at times of relapse one day. Sadly I was right and I am needing it at present walking round the house. I swallowed my pride for the 1st time today (1st time since diagnosis 13 years ago) and used it whilst out for lunch. I must admit it I did feel very self conscious and embarrassed initially in case I saw anyone I knew. I then got to thinking f**k it this is me and this is what I need to do at present (hopefully short term) and others views are not important in reality! Following lunch my sister chloe drove us back home and is coming back Tuesday with her little doggy Coco to take Bella to the park for a play and a walk. This is very helpful as I know from previous relapses and steroids I expect to crash and burn Tuesday as my last dose of steroids is Monday. Symptoms and improvements experienced today:- When I got up this morning I noticed I had the steroid flush.....my face and neck a pink sunburnt look and feeling hot. Very chatty and feeling a bit elated (hard as I expect to feel low in mood when this course of steroids finishes). Still burning pain in my left leg but no headache today 😊. Very dry mouth so lots of water drunk. I managed to move my toes in my right foot.....very small improvement but improvement none the less so remaining positive. I am strong and a fighter and I refuse to give up and let this monster get the better of me. The love and help of my family and friends keeps me fighting. Anyway enough for tonight I think. I have just taken 30mgs of amitriptyline so hoping for another good nights sleep. I also know I can have a really good rest tomorrow as Andy taking Bella to her martial arts class in the morning. Then my good friends Antonia and Colette are taking Bella to the park. Till tomorrow.......

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MS Relapse 28/7/17

2nd debilitating relapse whilst being on Fingolimod/Gilenya 3/08/17 Day 7 of Relapse and Day 1 of steroids So another debilitating, disruption to my life Relapse. This is my 2nd debilitating relapse in a period of 2 years (last one October 2015) and whilst taking Fingolimod/Gilenya. I have found this DMD (disease modifying drug) very good and it seemed to suit me. However I will probably have my treatment changed to Tysabri (a monthly transfusion) now. If this is the case after review post relapse in 4-6 weeks I will discuss in another blog. So my relapse started Friday 28/07/17 which obviously upset me as I wrote the following Saturday (I apologise in advance for the language) A note to my MS Please can you just F**K right off....... I have had a cold all week but that was ok, it didn't stop me doing what I wanted whilst off and I did rest too as Bella off all next week and I have plans for us! But then you decide yesterday to make an appearance just to spoil things. I go to millennium square to a concert and YOU force me to leave early as my leg is getting worse. Then today YOU decide to ramp it up further and even a shower has wiped me out 😥😡. So I guess it's GP and contacting MS nurse Monday morning and rest, rest fu**ing rest and maybe steroids and no sleep 😡😡😡😡😡 Sunday 30th I could still walk however not very well and this was getting harder by the hour. I realised I was not safe to drive at it was my right leg that was affected. Monday 31st I rang the GP's first thing and had an appointment within an hour. I could still walk in a fashion but was wobbly and week. The GP left a message for my MS nurse to ring back for advice and checked me out to rule out infection. My MS rung back and I had an appointment in relapse clinic on the Wednesday for review with a doctor. I continued to worsen through Monday and Tuesday and by the time I went to relapse clinic Wednesday I could no longer walk as my right leg was useless and could not move independently 😥. So relapse clinic Wednesday 2/8/17 after nearly a 2 hour wait and a scary wheelchair ride (pushed by my younger sister) I was seen by the registrar. She did all the usual tests for strength, feeling and co-ordination. No strength in right leg and numbness and pain left leg and right side of abdomen. She was unable to do balance test as I could not walk. she even removed and replaced my socks, trainers and jeans for me (a little bit degrading). She also wanted to rule out infection before steroids so bloods and urine sent off for testing. Prescription given for 5 days of high dose oral steroids along with lansoprazole to protect my stomach. As I was not getting a call till later I ordered the medications from Boots ready for today as no chemist tends to have them in stock. Finally I get to today. GP appointment at 8.30am which Andy helped me get to. The GP did state I should have rung as nearly falling and dragging my leg not great when going in. However blood results checked and all normal but no MSU results back yet. Sick note given to cover 3 weeks initially. Andy obtained medication from boots in preparation. This was done just in time as the registrar rang back to inform me all results show no infection therefore to commence steroids. 1st 500mg dose taken at 11.30am and I had forgotten how disgusting the taste was. Now it is 9PM. I have had 3 short sleeps through the day and had to take paracetamol at 6.30PM as I felt like I had been kicked in the back by a horse. I now have a dull headache, my legs are painful and I feel achey. I feel exhausted but not sure I will be able to sleep. Therefore I have taken 20mg amitriptyline and hope to fall asleep soon. I will see what tomorrow brings!

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Music and concerts

Anyone who knows me knows that I love my music and going to concerts. Music for me is a release as you can get lost in it, you just have to listen. In that moment in time you don't have to think about anything else just listen and enjoy. I like to take a few videos when at the concert and share on Facebook usually. I think I think everyone is as enthusiastic about music like me! The only difference now to pre MS is the planning, no spontaneity anymore for me! Obviously I have plenty of time to plan as I tend to get tickets as soon as they go on sale (this is required with really popular bands as some sell out in a few minutes). I have phone numbers for quite a few venues now to get tickets but prefer that a lot are in Leeds as I'm not a great traveller anymore. I also like to get back home to my nice, comfy bed and to be here for when Bella wakes the next morning! The reason for ringing for tickets is I'm not good at going up or down stairs to seats (balance and nothing to grab on to). Also I can't really climb over people to get to seats, well unless they want feet stood on or me falling in to laps! Because of this we usually end up with good seats so can just relax and enjoy. I also have plenty of leg room too for my restless, painful legs. Also both the Leeds venues we go to we use a different entrance so no queuing. I'm ok standing but not for long periods as my legs get painful along with muscle fatigue! Unlike when I was younger and pre MS, I now need a good rest before going to concerts to recharge my batteries and prepare me for the night ahead. Bearing in mind I'm usually in bed at 9ish and can be asleep soon after, I can get home as late as 12am after going to concerts. Then by the time I get to sleep after winding down it can be as late as 1.30am!!! For anyone that knows the spoon theory (unlimited number if non MS and limited number if MS if you get my meaning) I use more than my daily quota on concert days so usually wiped out the next day. Because of this if I'm due to work the next day I book a days holiday and rest all day. Something else I do now that I wouldn't have done pre MS is DRIVE. Great for hubby as he drinks and I drive. This is for a few different reasons! The main one being needing a wee! As my friends, family and work buddies know I am obsessed. I'm on tablets for frequency and urgency but I am obsessed with 'I'll just check to see if I need a wee' or 'I do actually need a wee'. Most of its due to messages from the brain 'you need to go' when actually 9 times out of 10 I actually don't. Let me tell you this is extremely annoying. Also my husband Andy says he spends half his life outside toilets haha. A bit of an exaggeration but you get what I mean! Anyway my point is if I was to have a few drinks I'd probably miss half the concert! The good thing I suppose is I have a radar key (a universal key for disabled toilets) this means usually no queuing or waiting which is great! Another reason for driving is I can park near to venue but easy to make a quick get away so straight home after. I can't really be bothered with public transport- waiting, busy and takes longer so no thanks! When we do go to concerts in other places such as Sheffield or Manchester it's always a hotel. I don't think I could drive that far home afterwards due to fatigue and a good excuse for a night away with Andy. That's me and concerts and this year I look forward to New Order, Ocean Colour Scene and Rod Stewart for now. Oh and rocky horror with family at the theatre. Next blog in a few months probably so until then! 😊

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13/1/16 Getting back to routine

13/01/16. Getting back to it following my relapse!

After just over 12 weeks off sick following my relapse I’m pleased to say I’m back! The 1st day back at work today felt really good,a bit like a fish out of water but good. I’m on a phased return which means I can build my hours up gradually to my normal working week. Also it helps me get used to everything again. It’s hard when you’ve been off for a few months I always feel anxious and low in confidence at first. However I always get there in the end and adjust fairly quickly. I like to be back in a routine.

I’m so glad as it was really starting to get me down. When you’re not able to do a lot there’s too much thinking time - Will I get back to where I was before the relapse. Will my fatigue ever return to a manageable, functioning level. Will I ever get back to work. Every relapse I get to thinking what will I be like when all the inflammation has subsided. Also what damage will remain with me this time. To be honest it scares the shit out of me every time. To me it’s the waiting game and I’m not always the most patient!

I’ve said it in previous blogs but I find complimentary therapies really assist in my recovery and my MS in general. During the past few months I have been for sessions of hyperbaric oxygen. Also in the last couple of weeks I’ve had 5 sessions of acupuncture.

Now the only thing left is I need to get back to swimming and Pilates to build up my strength.

As long as I can control my fatigue, build my strength up and plan everything I do then I can continue enjoying doing the things I like doing and spending quality time with family and friends.

My next adventure is my holiday to Lanzarote with Andy and Bella in a few weeks. It can’t come soon enough and I can’t wait!

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Review following MS relapse

12/11/15 Well I'm just over 3 weeks post relapse. I felt I was improving slowly however the debilitating fatigue remains. Maybe slightly improved but still very much present. Then a virus hit!!! Sore throat, annoying cough, headache and generally feeling under the weather! Bit of a nuisance to tell you the truth as knocked my recovery back a bit! Anyway yesterday was my neuro appointment. I saw the MS registrar and MS nurse. Got examined, bloods taken and questionnaire completed. The questionnaire is to see how symptoms have been over the last 4 weeks. This can then be compared to previous questionnaires. So I've had a brain stem relapse this time. I'd love to explain this but haven't a clue of the ins and outs. They're just all relapses to me. On examination a variety of tests are done including checking reflexes and sensation. One test is the tandem walking test. This is walking toe to heel. Something I could do pre relapse but still unable to do yesterday without losing balance. The reg did say as always with any relapse that some residual damage may stay. It could be minor and very subtle however. I'm to remain on my current treatment of finglodimod for now. This is ok for me as I think this suits me. If I was to have another relapse within the next 2 years however then I would be stepped up. This would be to a new treatment called tysabri which is a 4 weekly infusion. However I don't need to think of this for now. If my bloods come back and my white cell count is lower than expected, I will need them repeated in 4 weeks. However if they're ok then they can be repeated in 6 months. I will see my MS nurse again in 6 months and MS consultant in a year. I am happy with this as I know if any problems arise then I will be seen earlier. I did get told however that it is important that I rest. The reg stated that even though the steroids help speed recovery up, research shows that plenty of rest is beneficial especially after a relapse. Also the Reg and nurse did state that this is even more important as the virus has knocked me back a bit! My whole body aches at present and I have painful, restless legs. Maybe amitriptyline tonight!!! My memory is shocking at present too. Finding the right words when talking is somewhat frustrating too. Andy is probably used to me saying 'you know, the thingy' it's annoying but just yet another part of MS which is worsened by fatigue! My balance is still a bit off however my walking doesn't seem too bad on the whole. Hard to tell tho as not walked far. The walk from the car to the neurology department did tire me tho yesterday. Andy was with me tho if I needed support and Bella enjoyed running on ahead. I have watched lots of telly, done lots of Internet shopping and wrapped Christmas presents in between sleeps over the last few weeks!

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Last day of steroids day 5 21/10/15

Day 5 steroids last day. 21/10/15 So I'm come to my last day of steroids and I can say they haven't been that bad really. Apart from the 1st night I have slept quite well really. I do think the acupuncture has been the most helpful in regards to sleep. My acupuncturist using something called moxa. This is a burning herb put on the needles which heat the needles. In turn usually a better effect is achieved. The only thing however is when this burns it smells like Marijuana. As my hands are shaky at times due to the MS I have had odd looks in the past when stopped at the shops on my way home!! Last night however I woke in the early hours with a crushing pain in my chest. This might have been what us 'msers' refer to as the MS hug. It feels like someone is hugging you quite tightly and very uncomfortable! However my husband has a virus therefore think it could also be that that has been passed on to me. Sometimes every symptom you suffer, you hear 'it's your MS'! When in fact it is not always. I have got to evening time again and feel my fatigue is very debilitating at present. I expect this to worsen before I see a big improvement as the steroids have to take effect. My MS nurse explained fatigue to me and the effects on an MS patient. Basically due to the lost insulation of the nerves an MS sufferer has to utilise more areas of the brain to achieve the same results of a non NS sufferer. Therefore this fatigues the MS sufferer quicker as it requires a lot more concentration and effort. So this will probably be my last blog in a while. I expect to crash over the next few day's alongside having a bit of low mood time. I now need to concentrate on getting back to full strength for myself and my family. I would also really like to get back to my normal routine with home and work. I hope I have educated and given insight in to MS and steroids. This for both fellow MS sufferers, family and friends. I have learnt to adjust and accept my diagnosis and am not a moaner. I have nothing really to complain about and I just see relapses as a short term nuisance and interference in my life! I just felt after 11 and 1/2 years I wanted to provide some insight with the hope of helping others.

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Day 4 of steroids

Day 4 steroids. 20/10/15 I decided against amitriptyline last night as I felt so drowsy. Therefore I had an early night and managed about 7 hours sleep. It's bizarre really because you feel so exhausted however can not always sleep well. This can even be when not taking steroids. Your body is telling you that you have to rest however your heads arguing and very active! The acupuncture session yesterday was very effective due to being able to sleep. I have another session this morning too so I hope to sleep again tonight. I started having acupuncture approximately 11 years ago. The main reason I went was I wanted pain control without medication. Mainly due the fact I was gaining weight which in turn was affecting my emotional well being. I did manage to come off all pain medication after a few months and lost all the weight so I was happier in myself. However I have continued with acupuncture. The frequency depends on how I feel with my MS but usually once every 2-3 weeks. It helps in many ways for me and my MS. Such as anxiety, low mood, sleep, fatigue, pain, mobility and balance (very painful points at the side of my hands but it works). I do feel all complimentary therapies that I have help me with the management of my MS. In turn it helps me function on a daily basis. Other therapies I have are hyperbaric oxygen, massage and reiki. These may be discussed in later blogs. So I've had acupuncture this morning then home to shower. I felt completely wiped out after this so heating on and resting. My MS nurse Julie has just rung after dinner to see how I'm getting on. We discussed my symptoms and How I'm feeling. I find her so knowledgeable and supportive which really helps. I do think I was talking a lot tho as not as dopey as yesterday!!! Julie stated I would get an appointment for review in November to see my MS Consultant and herself. It will work out well after steroids which can take up to 6 weeks to work properly. My current treatment will be discussed to see if I will stay on the current treatment or I upgrade to a new treatment. I do like the DMD (disease modifying drug) I am currently taking and put my relapse down to stress but who knows! I plan to discuss DMD's in another blog. Chatter, chatter, chatter back to today. Once again I feel very fatigued but my mind is very active due to the steroids. My vertigo appears a bit worse today and when I walk I feel like I'm trying to wade through quick sand. Alongside being a bit wobbly. I also have very tingly hands. I have had altered sensations in both hands for a few years now. However when I relapse they tend to flare up a little. Now I need to rest as feeling very fatigued. I have just woken from a well needed sleep. However I do not wake feeling refreshed as I remain exhausted. However tomorrow is day 5 of steroids and my last blog for who knows how long!

[abichick38-blog]

Steroids day 3 MS Relapse and me

Day 3 steroids 19/10/15 I'll start by saying that amitriptyline was my saviour last night. I took 30mg at about 8.30pm and from just before 10.30pm I slept all night till 7am except 1/2 hour in the middle of the night. The only thing now is I feel so drowsy and fatigued. I expected the steroids to kick in by lunch tho then I will feel wired once again. It's amazing really. When I was diagnosed 11 and a 1/2 years ago I had bad pain in my right arm that was hard to control. It was a type of ms pain where the skin is so itchy it's unbearable. I used to scratch it so badly it would bleed! I was diagnosed in Harrogate and I remember the neurologist saying to me 'pain is part of MS and something you just have to get used to'. As a nurse I know this is not true. There are so many different types of analgesia and pain specialists that no one should suffer. So I'm sure people that know me well, know what I thought about this man. I had a 7 page complaint about the care I received in Harrogate. However I never submitted it in the end as I was trying to come to terms with my life changing diagnosis. I ended up under the care of the pain clinic and moved to Leeds so under an MS consultant and specialist MS nurse now in Leeds which is so much better. The pain clinic tried lots of different things till the pain was finally controlled. This was with pregabalin and amitriptyline 150mg. The medication controlled the pain brilliantly however I started with weight gain. I then started with acupuncture about a year later and through this managed to come off all medication for pain. So the amazing thing is that I occasionally take 10mg amitriptyline if I have pain. This knocks me out and I sleep just like the 30mg last night. However it makes me groggy and spaced out the next day especially all morning. How I even functioned on a regular dose of 150mg every night and worked full time as a community nurse I'll never know. However I did and had no problems with it. This morning I have had acupuncture. She has done a lot of points for sleep amongst others which I will discuss in tomorrow's blog. So probably no amitriptyline tonight but I will see what I'm like later. My mouth is so dry that I'm drinking loads. Balance not great but no pain which is great. Hands remain unsteady and shaky too. I just still remain very exhausted and groggy on top. My friend Jenny and her little girl Millie are visiting today and bringing lunch and treats. I'm looking forward to this but hope I don't talk too much and am not too dopey. So Jenny and her amazing daughter Millie have just left after a lovely lunch. I have a nice box of chocolates too to tuck in to later, yum yum. Thanks to Jenny for this and I look forward to meeting up again in Harrogate when I'm better and stronger. So I've got to tea time but have felt extremely weak and sleepy all day. Even writing this has been hard today. I think it might be bed time soon. Not sure if it is a mixture of relapse, amitriptyline and acupuncture. I'll see what steroids day 4 tomorrow brings.

[abichick38-blog]

Steroids Day 2 on my MS relapse

18/10/2015 So usually I can be falling asleep on the sofa anytime from 8pm really and in bed from 9. Not my 1st night tho. I finished watching Dr Who at midnight and only went to bed cause I thought I should. I certainly wasn't tired that's for sure which was somewhat frustrating! I did decide however that I could probably write all my Christmas cards, do all the Christmas present shopping on line and also hubbys birthday presents as it is at the beginning of November. This could be done in the next 4 days as fully expecting to crash on Thursday! Knowing how I suffer with my fatigue on a day to day basis I know nothing will get done easily then. I think I manage my fatigue fairly well really but I have had years to adjust. I have to manage it through planning and being selfish at times. No spontaneity anymore unfortunately! After a relapse though it's a completely different ball game. Just walking up the stairs or having a shower means about a 1/2 an hour rest afterwards. It sounds crazy I know and it has taken years to accept, well most of the time anyway. However those that are close to me and know me well realise it's not through being lazy. I would if I could. Pre MS I lived with one of my mates Laura who used to call me Monica from friends. This was mainly because I was obsessed with cleaning and tidying, everything always spotless and in its place! I don't think my husband believed this when I told him but priorities change. He is great tho as does all the housework and most of the cooking. I keep trying to persuade him we should get a cleaner to make things easier but he's not having it. Well I haven't actually mentioned the steroids yet. You see talking, talking, talking like I said before. My mouth feels so dry so I'm drinking lots of water. Luckily the taste in my mouth isn't too bad tho which is a bonus. The pain in my back seems to have subsided but I have a constant dull headache. No doubt through lack of sleep. When I was trying to get to sleep I was having the lovely steroid flushes alongside restless legs. Maybe an amitriptyline tonight for the pain and to try and make me sleep. I wrote all this last night before I finally fell asleep at approximately 2am. Only till 4.20am tho. Then again about 5-7am. Now up and breakfast and steroids taken! I feel sort of manic but exhausted at the same time. My body's saying sleep whilst my minds saying not a chance on earth. A bit bloody annoying to be honest. Andy has taken Bella to the park this morning so I can chill yet some more. Then I look forward to an afternoon in pyjamas with jigsaws, books and games with our gorgeous little girl Bella for some easy going playing mummy and daughter time. Whilst Andy escapes to the pub later for a little bit before he comes home to make tea. Then Roll on for hopefully more sleep tonight and then to see what day 3 brings!

[abichick38-blog]

Ms, me, relapse and steroids 17/10/15

So I have decided to blog.........everyone's doing it so why not. As my friends and family know I've had the monster since 2004. MS that is to those not in the know. It's been a bit of a roller coaster to say the least with lots more twists and turns to come I'm sure. However I finally feel after 11 and a half years I have come to terms with it fully and as its here to stay I just have to roll with it. That's not to say I like it cause sometimes it's a complete pain in the ass and likes surprising me at the most inconvenient times. However I think it just likes to remind me it's here to stay and I'm not invincible. Take this week for starters. After months of stress and very hard times at work. 3 off with stress and 1 with a broken ankle and everyone amazed I'm still going. So on Wednesday I go out for a lovely tea with friends for Mels birthday meal. My phone rings and as I stand up to answer it my balance goes and down I go!!! Yeah thanks for that MS, a bit embarrassing although I presume people probably thought I was drunk as they did not know about the monster and the fact I was driving. However as I walked back to the car after tea with my good friend Denise I did state my legs didn't feel right. Me being me tho I ignored the warning signs and set off to work the next day. I stopped for petrol and the alarm sounded loud and clear as I couldn't remember my PIN number. After I finally remembered it the lovely cashier said 'aw are you just coming off shift' Hmmm! No to that one as just starting! When I did get to the office I had started with shaky hands and legs. Also a bit of bumping in to things suddenly started as my balance wasn't being my friend! After getting a bit emotional emergency GP appointment it was. So after making sure I had no infections I started my very high dose steroids this morning. Day 1 out of 5 it is then and let me say taking steroids is shit with a capital S. I had the 5 tablets in my hand this morning 500mg in total. I just stared at them cause I knew that the minute they went in my mouth there would be that horrible taste that would linger for five days. I did it tho then put loads of marmite on toast to follow to try and lesser that horrible taste. I had already taken an omeprazole to protect my stomach from the horrendous side effects that could follow. So now I've got to teatime and the lots of talking has begun. My poor husband for the next 5 days is all I can say......well not all I'm sure he would say with eyes rolling! Also I now feel like I've been kicked in the back by a horse and I don't feel the paracetamol are doing the job!!! To top it off, the vertigo, weakness and wobbliness remain. People keep saying I look really tired and I am exhausted. However I know for the next 5 days sleep is not going to be my friend. However this is my early days in the journey of an MS relapse and steroids.