I’m still standing

It’s been a long while since I last blogged so time to put something down. Lots to cover but I will keep it short and sweet.

Looking back, we had a fun last summer in Greece island hopping between Skiathos, Skopolos and Alonasos. It was a typical Hanmer summer with lots of beaching, some nice lunching, a few beers, and boat trips. This year Corsica is on the cards.

I got some bonus dad points taking Isla to see the Weeknd at London Stadium last summer.  

I had a challenging year last year workwise. Rupert my long-standing boss retired which opened the door to stepping up. To cut a long story short despite some good industry support my attempt to secure the UK MD role failed which was not the best for moral. We will have to see what 2024 brings.

My body is feeling ever crunchier. Stretching every morning has become important along with my weekly pilates class. I have had some joy and pain relief from Supreme CBD recommended by my pal Kev who is the only person I know with primary progressive MS. I continue to enjoy my Padel Tennis and have been playing in a friendly league with my partner Chris. There is a project I am getting involved in to try to get some padel courts built in Hastings.

The girls are doing great and growing up fast. Isla is now soon to be 14 and has reached the tricky teenage years. Her new school she started in September Bedes has been excellent. Hons and Dids have started swimming for Hastings Seagulls squad 6 times a week. It is quite the commitment with a couple of 5.30 starts, but it is great to watch them progress. We have had some big Sussex galas where you are essentially racing against the clock and Hons has a county time for Backstroke and Dids is closing in on one for breastroke. I now spend a lot of time watching them so it feels like time for me to jump back in the pool and swim once a week.

I have managed to delve a bit further into the Hastings music scene which has so much going for it with loads of free gigs most weekends. Our local hospital Conquest has offered up some MS support through the lovely Clare who has been giving me hydro physio in a warm pool which I have enjoyed. On top of that I have met Hollie who is the local MS nurse who is there to support me going forward.

I had a great trip to the Yukon (Canada) in February to experience a proper winter. Minus 39 to be precise. We had had a fab time snow mobiling, dog sledding and trying to see the northern lights. We stopped off en route in Vancouver which allowed me to have an afternoon sit ski on Grouse mountain which was fab. I wrote an article about it you can read here

I believe in Miracles

It’s been a while since I have blogged, so I am penning this on a flight to Canada. Six months has raced past. My dear dad was very poorly, and we thought we were going to lose him in March. Complications from the radiotherapy to treat a second bout of prostate cancer seemed insurmountable but at the ripe old age of 84 a miracle happened. Dr Al Khadi stepped up and removed his bladder which has given him a new lease of life. The NHS takes some flack, but I will be forever grateful to the folks at the Norfolk and Norwich for keeping my dear dad alive. There was a fair bit of doom and sadness around this time, and it is hard to draw positives. However, I spent some lovely 1 on 1 time with mum which has not happened for a long time.

We had our first Christmas in the UK in 4 years which was nice to spend it with the family, but deep-down Fran and I would have rather been opening stockings on the beach. Fran and I made it to Dubai on our first trip in 13 years without the kids. It was nice to have a chilled week with not much to do and it was just about warm enough in January to get some sun. It was nice to stop and truly realise why I love Fran so much as we got to spend some quality time together.

The girls are on great form. Isla is nearly 13 and turning into a teenager. It’s all about Tik Tok and snapchat and how many hours she can get on her phone. I laugh as she has a Stussy T shirt and cargo pants which I was wearing at 15. She starts a new school (Bedes) in September which is exciting. There is an exam she must take but not pass so I have been dusting off my 35-year-old maths skills with some past papers to try and give her a moral boosting pass. Pie r squared anyone? Summer term is all about cricket and I have managed to watch them all once which is an absolute joy as well as getting to Hove to watch Sussex. They all swim and Fran gets very excited at the galas and they can hold their own on the running track.

I decided to stop my therapy/counselling as it is an expensive pursuit but one that has been well worth it. I have gained some much-needed perspective on life and learnt a bit about myself. I am currently in the zone of pushing my body to the max. Weekly pickle ball or padel is a treat but I limp off the court after an hour. I am getting stronger with my pilates and started lifting weights which I thought I would never do. I feel like improved upper body strength will serve me well when my legs eventually give out. We have been doing a fair bit of gardening of late and I can just about still mow the lawn and do some rather wobbly strimming. Getting a bit more social in Hastings with some rugby meet ups with Toby at the angling club and a monthly men’s group.

My boss Rupert quit to retire in January. I have been waiting a while to step up so this is my chance. I have filled some gaps in his absence but the formal recruitment process will not start till the summer so I have to bide my time. I had a great trip to Whistler for some sit ski before Christmas. I took 40 travel agents out to Toronto and Niagara in April followed by 4 days planning meetings in Paris. I am currently en route to Quebec City for our annual trade show Rendez-vous.

Therapy

It was time to hit the therapy button. My mood has been a bit low for a while now and this boy needs some help. How do you pick a therapist? It is not straightforward. I drew up a short list of three and ended up going with Dana at the Wellington Centre in Hastings who seemed to have a good read of me on one session. I have been having weekly sessions and it has definitely helped me zoom out a little and get some perspective.

The body is definitely creaking and my spasticity in my legs is getting worse. This is my hamstrings being super tight the whole time. My feet are still my most annoying symptom as they are numb, painful and angry all my waking hours. I have tried a tens machine which did nothing and I plan to explore CBD again. My daily stretching and massage gun definitely helps along with pilates.

I went all the way to glamourous Egham to try the Exopulse suit (pic below) to see if that would help my mobility and pain but not joy.

The biggest win for this blog is my annual cycling weekend with my pal Blair. We got an early train from London Paddington to Exeter and met with my uncle Peter who escorted us out of the city along the river. Day 1 turned into an epic, late start due to delayed train, 6,000 feet of climb, two punctures for poor Blair and we got to Dorchester at 20.00 in the dark! Day 2 was glorious – Studland, a ferry, Poole, Bournemouth, New Forest to Hamble le Rice. We managed to get a couple of great lunches with gluten free fish and chips on the menu. The last day was into a headwind and not very exciting A roads to Lewes. We did 230 miles in 3 days with 15,000 feet of climb. Not bad for the old crock (me!). Having now cycled from Kings Lynn to Exeter it does make me realise how lucky we are with our unspoilt quiet coastline here. 

The girls are on good form as ever. We enjoyed Honor taking the lead role in the school play. Isla medaled in a couple of Gym competitions and they all swum well in school swim galas. The highlight was a great school cross-country run from Dids (6 out of 63). The girls have started playing hockey on a Saturday for the Hastings Saxons, which involves a bit of travel around Sussex. It is a joy to watch them all playing on the same team.

We did our first family music gig with local boy Tom Chaplin (Ex Keane) who was amazing at Eastbourne. I had a big work conference, which I organized in London, which was a success and always pleased to get my body through in one piece.

I write this recovering from a nasty flu, which took out the whole family. I don’t really get sick and apart from 24 hours feeling rough with covid this takes me back to a Greek holiday 8 years ago when I got whacked. It was the worst possible timing as Fran and I had to cancel a holiday I won to Dubai, which would have been our first trip since we had kids. We hope to rearrange next year. This Saturday I get to see if I can still sit ski in Whistler, which is a nice little pre-Christmas treat for me.

Grit

We are on holiday in Croatia for the first time, which is lovely. Despite the scare stories, we cruised through Heathrow Terminal 5 for our BA flight to Split. One night in the picturesque Split, which was rather busy for us small town folk and we got a chugger ferry over to Brac Island and stayed at the lovely Waterman Beach Resort. The Aegean Sea is gin clear so perfect for swimming and we are at home on the mainly stony beaches. Our holidays are quite simple affairs with days spent on the beach ideally at a nice beach club or by the pool. We mainly self-cater but try to find the odd nice lunch or dinner out. The kids are still partial to a kids club and are keen to make friends, which happened on Brac. From Brac we went to Hvar and the more upmarket Hvar Town, which was full of young things looking for a party. Jelsa was lovely and it was so nice to see Tania and Hons great friend Daniela who moved to Italy last year and came to see us. Defo would recommend Croatia the only negative is the people can be a little on the gruff side.

Summer term at school is full of fun with sports day, school fete that Fran organised on the back of running 4 of her own events. We had a lovely day at Steph and James’ wedding in Ewell. Isla is growing up and has just turned 12, and had her first abroad trip to France with school. Dear Pa who just turned 100 sadly passed away but it felt like it was his time to go. We had a great Hanmer family weekend in Norfolk celebrating mum and dads golden (50 years) wedding anniversary.

Original Hanmer crew – Left to right Brother Jon, sister Frank, Dad & Mum and moi

MS wise I have had to dig in a little. I have lost the faith a little with being in a reasonably good place with my MS. I have been reading quite a lot of MS articles recently where they talk about those faring better having grit. I do feel my grit levels are up there but I am in a zone where I want more from my body, which is unrealistic. I did my first padel tennis tournament at our club playing doubles with my regular partner Alex. It was a round robin format where you play a set against everyone. We were in the second tier and won two games. The other three got away from us and whilst I should have been pleased, I played 5 sets of padel on a very hot day. I was frustrated, as we should have won a couple of the ones we lost. My problem is we get to 4 all and I get really stiff and cannot move and then play well below average. I am back on the testosterone, which has helped, but I did not have the same lift I got from when I started. Fran has bought a massage gun, which I use nightly to beat up my legs and feet and try to ease the stiffness.

What is next? I need to save some cash but there are some options on the table. Harpal Bains who does my LDN has talked about peptides with Dr Khan and the possibility of taking growth Hormones. I am still toying with FMT, which is a poo transplant but I am not convinced about it and it is £4K. I spoke to a health coach who says she has fixed her MS but wants £3K for three months coaching.

I tried the turmeric shots as I was bored with the Instagram ads but they didn’t give my any sort of lift. Joe Dispenza is doing a weeklong Progressive meditation workshop in London at Excel in August which I really want to do but I am in Croatia so is not an option. Normally something presents itself at the right time so we will see what is next.

Fran and I got to Wimbledon for the first time which was a great day out. We managed to get amazing accessible seats in the third row right on the net. I got to the test match at Lords with my old uni mates and a couple of T20 games.

Jack in the Green Hastings

I have bought a push lawn mower and have been doing our lawn, which is a bit of a field on a mega slope. It is a 3-hour job for our gardener but I can do it over a couple of days with a few sittings, which is a win. I had RVC my big trade show in Canada for the first time in 3 years and survived it staying on my feet, which again is a big tick. It was great to be back in Toronto with my Brits crew. My beautiful new ebike finally arrived just before we left so I am planning an October tour cycling over 3 Days from Exeter to Brighton with my pal Blair to continue the tour around the British Isles.

Final night at Rendez-vous Canada

Busy boy

Life has busied up and a blog post is well overdue. Thanks to Lisa who very kindly dropped me a line to see how I was doing so this one is for you. Covid struck on our return from Mexico with Fran dropping first followed by the girls and finally me. It was nothing more than a bad flu for Fran and I and the girls had no symptoms. It felt like we had to get it at some point so now we have survived it Fran with one jab, me with two and the girls with none.

Fran’s work has come back and she has gone from zero to super busy which has been a bit much. It is nice to be back up to two salaries again after two and a half years but juggling freelance and her own work has been a challenge.

Healthwise I am steady I would say. I have noticed my hands and feet seem a bit colder the whole time now which is rather annoying. The headache was ramping up again so I have been going back to see Tim in Clerkenwell every two weeks for a myofascial release massage and we seem to have got back on top of it which is a relief. I tried and failed to get testosterone supplements on the NHS to save some money. The NHS seems to be in a poor state and you cannot get anything now. I am in the process of doing a load of blood tests to get a new prescription. I definitely notice the difference without it with a bit less fuel in the tank. We did a mothers days circular walk and I tried 4 miles and had to give up at 2 after a couple of tumbles on narrow stretches of path with my legs weighing heavy.

The girls are on good form as usual. Easter they did the most amazing theatre workshop called the West End Experience with their White Rock Youth theatre. They learnt four numbers with singing and dancing it was a triumph and Dids and Hons opened it with a solo. I have finally got a new bike on order which has been a big hole in my life. I am back swimming 1km a week and stretch every morning and do 20 mins red light therapy. I have been enjoying my Padel tennis at Rye and started playing pickle ball in Hastings which is another short form tennis where you also play doubles.

I started trying Taopatch which is a touted as a help for the MS crew. It is a small patch you tape to your body and it has definitely helped with my balance. The sales blurb is a wearable nanotechnology device that combines acupuncture and light therapy. I got the starter pack 3 patches, lost one (not so good) but keen to try the Pro patches at some point when I can scrape some money together.

Work has busied back up and I am off to Canada 20 May which is exciting. Be great to see some of my HQ colleagues after 3 years. One of the highlights of the year so far is my GrandPa or Pa as we know him turning 100. Isla and I went to see him we got him a new ipad for his 100^th!

Pandemic Travel

Whilst Covid has forced a lot of people into their shells and most people wouldn’t dream of jumping on a plane in a pandemic we don’t stop travelling easy. Travel is in our blood as a family whether it is work or play and we have done 5 trips in the last two years. One thing my MS has taught me is life is short and you have to take every opportunity to enjoy life whatever it throws at you. For the Hanmers that is holidays and we will always priorities that spend over anything else. You get such a sense of freedom and space on hols and guaranteed sun.

The curious thing about travelling in the last two years is as the vaccine goes into more peoples arms travelling has got harder! Our first trip in Feb half term 2020 was a break to Cape Town when news started circulating of this mystery virus coming out of China. I remember raising my eyebrows on the flight home with a family coughing away in the row behind us. Fran had bought us Wein air purifiers which we have used since on planes and in airports.

Summer of 2020 we had a wonderful 2 weeks Glamping in Kos. No testing just mask wearing on the plane. We love Greece and it has become our go to place for travel in peak summer holidays. There are enough islands to escape the crowds and it represents the best overall value in Europe for a family holiday. Kos was empty as staycationing was the preferred thing to do with Cornwall turning into the Costas.

Christmas 2020 was are next escape to Jamaica. Fortune comes into play here as we managed to leave on the day they imposed level 4 lockdown. Then the mysterious Kent variant appeared and the whole world got freaked and Brits got banned all over the world. This meant the flights stopped and we effectively got stranded. Mariella Frostrup was caught in the chaos flying a few days after us and ended up having to quarantine in an old Sandals resort. We ended up having a glorious 3.5 week trip instead of 2 weeks and got a repatriation flight home. No testing and the girls gained some cool status by doing home schooling on the beach. Again no testing required but a level of stress with having to go to Kingston to get Isla a new passport which had expired with the extended stay.

January 2021 travel abroad got banned. Simon Caulder who is an excellent journalist writes a really good review of 2021 restrictions which shows how much they have changed and how people’s confidence in travel has got shot to pieces.

Summer 2021 we were in the traffic light phase of travel and Greece was a good bet with low cases and we went island hopping. This is where things got more complicated with testing to leave Greece to get back into the UK. Thankfully this was a lateral flow so fairly straight forward. It does leave an element of what if I test positive and cannot come home. The joke with it all is the UK has had probably the worst covid numbers anywhere so you feel safer than being at home and less likely to catch it.

Christmas 2022 we have come to Mexico which is a good bet as they have stayed fairly low on Covid and have been open most of the pandemic which is a huge part of their economy. No testing to come in. Omnicrom is raging in the UK and there is no mention of Covid here from where I write this. Thankfully the government has seen sense and dropped the pre-departure tests and gone to lateral flows on Day 2 as oppose to PCR. We managed to get some £1 PCR tests from 123 Covid testing so saved a chunk here and manage to slip in and avoid waiting for a negative test so the girls can go straight back to school.

One thing that has been a bigger challenge for travel this last year has been getting back into the country at Heathrow and Gatwick. Border force have either been under the pump or they have not had enough people working at key times like August Bank Holiday weekend 2021. There are not many benefits to my MS but at times like this we do a massive queue jump and take the disability lane as I have my stick and standing for any length of time would not work for me.

We are a very happy family but 5 is not the magic number when it comes to travel in terms of booking hotels or accommodation. It is all about 2 adults and 2 kids with 3 kids it really limits the options of where to stay. Fran and I tend to prefer an apartment/villa on the beach where as the kids love an all-inclusive with kids club to make pals. It is always a balancing act keeping everyone happy. It’s easy to be snobby about the all inc but seeing the joy on the girls faces with free ice cream and   a bucking bronco makes it all worth it. For us the All Inc lacks a little soul as it is a similar experience wherever you go. However, I would say Hillside in Turkey does it as well as anyone with one of the best buffet offerings. The kids are happy when busy so kids clubs and or a swimming pool top the bill.

I can understand why people have not travelled as I think the biggest worry for people is getting stuck. I have always travelled with my laptop and now we are working from home it is possible for me to work anywhere, which is what I did from Jamaica. We always travel on airmiles which gives you a level of flexibility in that you can cancel the day before you travel for no penalty. If you are not married to Fran I suggest booking with a travel agent or tour operator and that will offer you the flexibility you need to change your trip. Don’t be put off travel in these times it provides an opportunity to see places less busy and life is short.

Kundalini Awakening

We have escaped to Mexico for Christmas and it is just the tonic to the Omnicrom doom and gloom at home. Our first stop was the rather stylish Palmaia House of AiA hotel just outside of Playa Del Carmen. It was a great spot with a spiritual vibe, vegan food and lots of classes. The kids made pals with some lovely little ladies from Toronto. Fran and I enjoyed the morning breathwork session at sunrise and we did a little yoga. I did this light healing ceremony with an eclectic bunch which culminated in looking at a strobe light followed by some caustic natural eye drops that stung like hell to open up my third eye. We did a cacao ceremony, met a shaman and took part in a gratitude ceremony. The highlight was a soul reading with Pilar with no pre-chat she asked me to say my name three times and then peered into my soul. The gist of the reading was that my energy was blocked which made sense. I asked her for some guidance and she asked me if I had experienced a dark night of the soul. I wasn’t sure then I realised this was the time Isla was born very premature in France and I could have lost Isla and Fran. This was the start of my MS symptoms. She told me this could be my Kundalini awakening. Kundalini, which translates from Sanskrit to ‘coiled snake’, describes the energy that rests, often dormant, coiled at the base of the spine. When you experience the full spiritual awakening it is like being reborn which sounds great. However, I seem to be stuck with the negative impact which can manifest itself as an autoimmune condition.

It is certainly an interesting concept and chimes with the work I have done with Dr Joe Dispenza and if you get it right you can have a miraculous healing. I plan to do more reading on this and explore this further when I get home. Pilar also recommended an amazing acupuncturist Hernan who we saw twice out of the resort and he eased my headache which is always lurking around.

After the luxury of Palmaia we headed down the coast to Xpu Ha and stayed right on the beach in a basic one room apartment. We had our fill of Vegan food. I love my vegies but after a week I found the texture challenging I was happy not to see another mushroom for a while. The apartment was a little tight for the five of us but waking up on a stunning quiet beach to amazing sun rises and a morning dip was worth it.

I have started playing pickle ball with Fran in Hastings which is another game I can play (check me out!). It is a short tennis we have been playing indoors with an older crowd. A smaller court, wooden bat and a plastic big ball with holes in it. It is fun and I can manage an hour before my back packs in.

The girls school managed to stay pretty much covid free until the last 2 weeks of term which meant the carol concert was cancelled, which we were very sad about. We managed to see Hon star in her school play and they had a normalish end of term. Fran is making her mark as the chair of the PTA (Friends of Vinehall) with an excellent fireworks night and a fake ice skating rink in the sports hall for the kids in the last week of term. We did a fun forest school party for Dids in our bit of wood, Hons had her first gym comp. with the school and we went to Bedgbury with our friends for the Christmas lights.

Some downtime allows for a little contemplation. I have to say I feel pretty chipper right now and at peace with myself. Everyone always says how well I look. I am very happy to be still working which is not always the case for my MS pals. I would say it has been a good year for Dr Hanmer (me!) treating my MS. The hits being low dose naltrexone, tanner device, testosterone supplements, finding Matt who has bought my headache in check with his acupuncture needles and massage. An acknowledgement from the establishment (my Neuro) that my MS is stable. My goal has always been to run again whilst I am walking OK getting me running seems a bridge too far. Whilst on the beach I have a go which makes the girls laugh, my brain just cannot compute what needs to be done. I sort of hop along in slow motion! I do live in hope maybe 2022 is the year we bust it out. Peace and love to you all.

Tanner Device

A blog update is rather overdue. Life has got busy again with Canada’s borders opening and our activity ramping up again. I am not complaining it is good to get out and go to some events and get our marketing campaigns in market.

I had an encouraging catch up with my neurologist on my latest MRI scan which showed no new lesions. I don’t totally buy into the whole MRI tracking your MS as symptoms are not always linked to this damage for me it is all about how you feel. That said it was nice to hear her say that I didn’t have Primary Progressive MS and that my MS was stable. Would you believe it that is not supposed to happen! It would have been nice to get some acknowledgement for all the effort I have put in to manage it but sadly the medical establishment are not interested in anything that is not a licensed drug for MS. I did a video on my approach to MS on my pal Dom’s Youtube channel you can watch it here.

The headache is still an issue. I went to Bath to see Peter Bishop who was recommended by my chiropractor to fit a Tanner device. The tanner device is a mouth guard that sits on the lower set of teeth and simulates the perfect jaw position. You wear it as much as you can in the day and importantly at night. It instantly took some pressure off the back of my head so I am hopeful it will do the job. Matt in Bexhill who does myofascial release massage may well be my new hero. I have had a couple of sessions and he has moved it so I am hopeful come Christmas it will be on the way out.

I finally managed to get my hands on some medical marijuana to try and help with my chronic pain in my feet. I have tried it a couple of times with a teeny tiny dose but it seems to jump on my headache and make it worse which is not what I need. I will sit on it and try again when hopefully I am headache free.

I have joined the Rye tennis club for Paddle tennis which has been a real joy. Paddle takes place on a smaller court than tennis and you have walls which you can play off and a partner to do all the running. It is a great game and one I can play to an OK standard with my limited mobility. I could do with a bit more movement but you get that satisfaction of hitting a winner and winning a game.

The girls are super busy at school with loads of sport which makes me very happy. Diddy is the star of her netball team and is swimming a year up in the swim squad. Hons is an all-rounder enjoying butterfly, cross country and is a very determined attacking midfielder at hockey scoring all the goals. Isla is the breast stroke queen in the pool and they have been scooping up swim medals.

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Fran has finally got some work on the books for next year and has taken the plunge with some freelancing which has been good news.  A low point of late was my beloved ebike getting pinched in my old patch. I went for dinner with a pal on Bellenden Road and someone angle grinded the lock and it was gone. I was supposed to be doing a big cycle the next day so had to head home to Hastings with my tail between my legs. Fortunately insurance paid out so I will get a new better one (!) in the spring.

Summer Vibes

Summer is here and we have shipped off to Greece. Our new house in Hastings has proved an attractive Air BnB proposition with the beach hut so it means we can rent it out and holiday for free which is our only way to get away this year as Fran is still not earning. Hot weather is reported to effect 80% of people with MS making symptoms worse. Not sure if I have been in denial but I have never experienced it before this summer. When the mercury topped 25 degrees at home for a few days I definitely felt my feet get lumpier.

My feet have been bothering me as they can be quite painful now so I managed to speak to my MS nurse for the first time. She said there is an option to take Gabapentin or Amitriptyline which I am not mad about. I have been reading more about how you need to protect your brain health with MS as mine is shrinking faster than yours and these drugs don’t help. I would rather find a natural alternative so am hoping to get hold of some medical marijuana to see if that can help. The doctor I spoke to at the medical cannabis clinic said it also might help my walking as well. There is a research project 21 going on and if you have certain conditions including MS you can get hold of it for a discounted rate. I have to jump through a few hoops to do this so waiting to see if I can get hold of the herb.

My headache is still in full effect. The botox loosened it up but not for long. I am going to have to go back to London to see Tim who shifted it before. I did have a session with my chiro Ian and he has recommended I go and see a specific dentist who is good with TMJ problems will see what that brings.

I connected with Simon Parker a journalist from the Telegraph who was cycling around the UK in the pandemic and looking for people to meet up with. I escorted him from Pevensey to Hastings and we had a pint and I ended up in his article here

The girls are on good form. We managed to have a sports day at school which was an absolute delight and the Hanmers managed to be in the medals. I enjoyed our run in the footy world cup and having cricket on the BBC has been fab. Paddle tennis came on the radar watching Wimbledon and I had a go with Fran in Rye to see if I could play. I am looking for another sport I can play and also a way to make some local friends. I used to be a decent tennis player but not being able to run stops that. Paddle requires less movement as it is a smaller court, you play doubles and off the walls so it is a goer. I went out with the 1066 cycle club who seemed more my pace and hope to join in September and make some more local cycling pals.

Our island hopping Greek holiday started in Mykonos for a couple of nights which we were not sure what all the fuss was about. It seemed overcrowded, overpriced and too many Russians. We are backpacking travelling super light with the girls carrying their own stuff for the first time. A ferry took us to Tinos which is more our scene with a local Greek vibe some nice beach clubs and fab swimming. The wind is quite something here in the Cyclades but does take the edge off the temperatures.

I am moving the best I have since diagnosis. The LDN and the testosterone supplements seem to be working. I managed to walk 4.5 miles around Port Lympnee Reserve which would have been impossible a few years back. I won’t accept the normal progressive MS worm on the graph going up with disability (y) and time (x). Currently I have pushed it into a slight downward trend and long may that continue. 

My most liked pic on instagram with Lotte my bros dog

Golf with the old man

Botox

I have been in a battle with my body the last month. There has been a few arguments, a fight and a few tears. The headache from hell has returned which drops my overall wellbeing and makes life a big struggle. My new Doc recommended botox in my temporomandibular (TMJ) joint. This sits just behind your ears and for me is locked pretty tight and the cause of my constant headache. Tim managed to release it over a number of sessions when I was in London with myofascial release. Whilst I might go back to see him the botox was worth a go as it numbs the joint and breaks the circuit of the headache. Some of my twitter MS crew have botox in their legs to help with spasticity. I trotted up to London for the first time since September to have the jab. Whilst it takes a little while to kick in early signs is it has released the grip on the back of my head.

Our first UK Easter egg hunt in 8 years

My testosterone results came back and I am literally running on empty. I am going to supplement with a special cream from our German friends. The Naltraxone has settled in well and definitely has given me a boost to my mobility which is a BIG win. Dr Harpal believes that getting testosterone levels right for me along with the Naltraxone will really help my energy. To get me started I had a shot of testosterone in my ass which smarted a little. I also had a Vitamin drip to top me up.

the beauties are growing up!

The other challenge for me right now is my poor old lumpy feet. They have been getting slowly worse over the last few years and now at times they are painful. Reflexology, Epsom salt baths provide short term relief but I am worried it might curtail my driving long term. Fran has found me some a new supplement to try and I am hoping and praying it will help.  New symptoms you tend to slowly get used to and then live with it but this one is a brute.

A big win for me on the bike is I have got my clip in pedals back on which I would not have thought possible so it shows some improvement in my legs. I did my first off road sportive with my pal Brent on the South Downs way. We were lucky with the weather and took on the 72km course from Plumpton. Most people were on gravel bikes which is the new craze sticking a wider tyre on a road bike. I cannot quite see the attraction on some pretty lumpy paths so I was very happy on my full suspension hybrid mountain bike. It was lovely to be off the roads with stunning views but there was a lot of gates to open and close which is a bit of a faf on the bike. The distance was at the limit of what my ebike battery so I bailed out the last 15km on the road but it was great fun and 7 hours in the saddle.

The girls are on great form. I am delighted they are all playing cricket at school. We have started roller blading at the YMCA on the weekends alongside gym, tennis, drama for Hons and their favourite horse riding. Our garden and little bit of woodland is an absolute delight with a riot of bluebells, a resident buzzard has joined the woodpeckers and the owls.