Tag: fall

139 I’m back!

2022 hasn’t started quite as well as we were all hoping, with all our lives still being impacted by Covid 19, Brexit and worries about our financial futures.  I am trying hard to muster every ounce of optimism I can find, but it’s not always easy.

I’ve been struggling to think straight for the last few months, let alone write, so my blogging has totally fallen by the wayside.  During the last year, I have retired from work on medical grounds, worked my way through complicated pension paperwork and evidence, sold my house, been rescued by family and eventually moved to a rented ground floor apartment nearer to my children and friends.  It has been a lot to process, but I think I’m finally reaching a point of acceptance and can now begin to look more clearly to the future. 

My brand new park home has never materialised, so I have had to change my plans. I am in now the process of buying a lovely new apartment and will definitely feel much more secure once the solicitors have done their stuff and the place is finally mine. I won’t say any more on this for now, just in case I jinx it! 

As always, my MS has been making itself known.  I have had several falls in various situations and suffered lots of bruises.  It really does hurt when you hit the ground when you’re this size!  

I had an MRI scan in July, which did not find any new disease activity in my brain and spinal cord … this is the first time a scan has revealed this outcome.  It’s a cause for cautious celebration, but sadly, it doesn’t mean that my disease is no longer progressing.  Hopefully it means that the DMT (Disease Modifying Therapy) I’m taking (Tecfidera) is helping.  I’m going to do a future blog post on MRI, progression without visible lesions and “smouldering MS”, so will talk about this more then.

I am still thinking about HSCT, but two years on, have much more doubt than I did previously.  I’ll do a future blogpost on this at some point too and am mindful of the need to be transparent about funds raised as well.

In the meantime, I’m going to spend the next few months researching what I can do now, to help me to live my best life with MS and putting what I can in place.   I have started a bit of a list and will add to it as I begin my exploration.   I am also open to helpful suggestions if anyone has any.

LDN (Low Dose Naltrexone) 

“Low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases”.  Low-Dose Naltrexone | National Multiple Sclerosis Society

Fampyra

“Fampyra is indicated for the improvement of walking in adult patients with multiple sclerosis with walking disability (EDSS 4-7)”.  Fampyra

HRT (Hormone Replacement Therapy)

“A further observational study in 2016 looked at 95 post-menopausal women with MS, of whom 61 had used HRT. The use of HRT was associated with better physical quality of life. It is thought that female hormones may have a neuroprotective effect and this is why HRT may be useful”. MS Trust: Menopause

FES (Functional Electrical Stimulation)

“Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord”. Functional electrical stimulation (FES) | MS Trust

Red Light Therapy and Near Infrared Light Therapy / Infrared Sauna

“Infrared light can penetrate skin and affect structures lying underneath, and Lyons first thought of applying it to MS after talking to colleague Janis Eells, who had studied its retina-healing powers. Other researchers are exploring infrared treatments to help with diseases such as Parkinson’s and muscular dystrophy.” Red Light Therapy

Improving Gut Health

“The microbiomes of people living with multiple sclerosis (MS) are differentTrusted Source from those of people without MS. Based on this information, the hope is that new therapies can be developed to help people with MS”. Healthline: What’s the Latest on the Link Between MS and Your Gut?

Taopatch

“Taopatch is a patented wearable nanotechnology device that combines acupuncture with light therapy”. Taopatch

Hyperbaric Oxygen Therapy

“Hyperbaric oxygen therapy (HBO or HBOT, also called high dose oxygen therapy (HDOT)) involves breathing oxygen through a mask in a pressurised chamber, similar to a diving bell”. Hyperbaric oxygen therapy | MS Trust

Cannabidiol (CBD)

“One in five people with multiple sclerosis (MS) surveyed in 2014 told us they’d used cannabis to help with their symptoms. They said it can help with muscle spasms or stiffness (spasticity) and pain”. MS Society: Cannabis

Revitive

“EMS is a world renowned technology that works by delivering electrical pulses that activate nerves in the body, causing muscles to contract and then relax”. Revitive

Circle Rehabilitation

“At Circle Rehabilitation, we build bespoke private treatment and rehabilitation programmes for people with multiple sclerosis. Our aim is to build your independence as much as we can. Our rehabilitation programmes are medically-led – your care and rehabilitation is overseen by one of our specialist rehabilitation consultants and physicians”. Circle Rehabilitation: Multiple Sclerosis Treatment

The MS Gym

The MS Gym

Exercise

Diet

Car with automatic gearbox and other adaptations

I want to finish by wishing you all the very best for 2022.  Once again, I have been very poor at staying in touch with the people I care about in recent months (years). Between lockdowns, my anxiety and increasing disability, I know I have neglected some people.  Hopefully once I’ve moved and started to take better care of myself, I can begin to put that right ❤️🤞🏻

Take good care of yourselves everyone X❤️X

134 Falling

Paloma Faith -Falling Down

Falling, tripping, bumping into things, misjudging space and distance – these are all everyday occurrences for many of us with MS.  Moving around, using stairs and walking through doorways require concentration and focus and it’s not always easy to maintain that level of focus, when most of your previous life, you didn’t need to!  This is one of the reasons why those with MS are often fatigued – every day movement is exhausting.

The Fall – Hit the North

It can also make life a little risky.  My arms and legs (and currently my forehead) are often full of mystery bruises from various incidents involving furniture and doorways.  I’ve had a few bigger falls and many near misses – loss of balance or footing, or maybe legs refusing to work, but just managing to grab something (or someone) to stop myself falling.  I find it quite terrifying! 

Fallout Boy – Dance, Dance

A couple of weeks ago I had my worst fall yet and ended up having X rays and various examinations before being diagnosed with bruised ribs (and bruised everything else!).  This fall happened in my own home, where I should feel safe and has really shaken me up.  If I was having any doubts about moving to a stair free home at this point, those doubts are well and truly gone.

The Primitives – Crash

My house went up for sale a week later and sold for above asking price within a few days.  I am very thankful that this was as stress free as it possibly could have been and my buyer seems lovely – she has already promised to love this house as much as I do ❤️


About 10 days after my latest fall, I suddenly developed severe vertigo.  My GP and MS Nurse do not believe this is linked to my fall, but is more likely a small relapse.  I have a had fleeting episodes of vertigo before but nothing like this – everything moving, nausea and vomiting and everything but sitting still and quiet made it feel worse.  I am now awaiting another MRI and an appointment with the Community Rehab Team and have anti sickness meds to help me in the mean time. Thankfully, the vertigo is improving each day and I’m hoping it’ll soon subside altogether.

You can read more about vertigo in MS here … MS Trust – Vertigo

Thank you to friends and family for all your continued love and support on this crazy journey 💜

113 Reflections

I always struggle a little at this time of year.  I guess we all tend to become a little reflective at this time, looking back on what we have achieved, or otherwise, in the last 12 months.  What aspects of our lives have improved and which have become worse?  As well as this, it tends to make me reflect on life in general and to notice the passing years and wasted time.

During the last year I have reduced my hours at work – this is the first time in my life that I have ever been a part time worker.  This was definitely the right decision for me, although my MS has progressed further, to an extent that I’d probably benefit from reducing my hours further.  Unfortunately my finances don’t allow for this at the moment.  

The last few months at work have been particularly challenging and by the end of December my symptoms were so overwhelming I was forced to take some time off.  I am back at work on Monday and although looking forward to seeing my work team and getting back to”normal”, I have a lot of worry about whether I can cope.  Unfortunately this worry is disturbing my sleep, contributing to my fatigue and making me feel worse! 

I had a telephone appointment with an Occupational Health nurse in December – she was supportive and helpful, but overall, I’m not sure I gained much from it.  She has made some suggestions about changes, or “reasonable adjustments” that could be made to support me at work, but none of them really solve the problems I face.  The building I work in is not disability friendly at all and I don’t think there’s much I can do to change that.  At a time when public sector workers are under a resumption of pressure, austerity measures and huge workloads, there’s no way I can reasonably request to do less.  

On the plus side, I am now receiving the Daily Living Standard Rate PIP (Personal independence Payment), for which I am very grateful.  I also have an appointment this week with an Occupational Therapist from the Community Neurology Team, to provide advice and see whether there are any adaptations or equipment that could help me at home.

This time last year, I was managing well in my little house.  I live in a small 130 year old terraced house, with an exceptionally steep staircase!  Friends often comment on how steep it is, with very narrow treads, but I’ve been determined to push through and keep using them.  Over the last year, the stairs have become more and more challenging for me.  Going up, I feel reasonably safe and usually climb on all fours.  Coming down is another matter altogether!  


I fell down stairs (from about half way) a few weeks ago and since then, do not feel safe when coming down the stairs.  I have been thinking for a while that need to move to a bungalow or a flat and my recent experience has confirmed this for me.  I feel very sad about this …I love my little house and I love where I live …but I need to feel safe and independent. 

I have a personal Instagram account and as usual asked the #BestNine app to find my most popular photos of 2019.  This year my life seems to have consisted of family and finger nails!   Where are the nights out, the holidays, the weekends away?  Where are the day trips, visits to galleries and exhibitions?  Where are the cocktails and journeys on the 192?!  Where are the gigs and festivals?  Where are the protest marches and rallies?  … I want to go back to my old life …fuck you MS. 

If you’ve read this so far, thank you for indulging me.  I know I sound like a whinger and I promise I’ll snap out of it soon!  I have much to be thankful for and when I reflect on 2019 with my positive glasses on, this is what I find …

  1. My wonderful children and their equally amazing partners 👫🏼👩🏻‍🤝‍👨🏼
  2. My fantastic brother, sister, their partners and children ❤️
  3. My wider family 🧡
  4. My kind, supportive and loyal friends 💙
  5. A job I love with the best ever colleagues 🖥
  6. My beautiful cats! 🐈🐈
  7. My little house and my local community 🏡
  8. I can walk and talk and take care of myself 💁🏼‍♀️
  9. I have a plan to improve my life … HSCT here I come! 💉
  10. The amazing support and efforts of family, friends and strangers alike, in helping to raise the funds needed to pay for my treatment 🙏🏻

Happy new year everyone! 

GoFundMe

111 Mrs Bump

There has been a lot going on over the last couple of weeks so thought I’d come back with an update.

Sheila ran another stall at the Vintage Village on Sunday and raised a very respectable £116.  Alan very kindly sold a few items of clothing through his vintage shop, 20th Century Stores and raised a further £90.

So the vintage sale fundraiser had brought in a grand total of …

Thanks again to Alan and the Vintage Village, but most of all, to my lovely friend Sheila for so much hard work and for all your support 😘

~~ 🎄 ~~

Thank you to family and friends who have decided not to send Christmas cards this year and to make donations to my fund instead.  This has raised a total of £470 …absolutely amazing!  Thank you everyone 😘

We had hoped to hit £20,000 by Christmas, but with all these amazing efforts, our grand total now stands at …


I had an appointment with my neurologist on Monday …always a bizarre experience.  Neurology services are obviously over stretched and trying to summarise a year’s worth of symptoms, concerns and questions into a rushed 10 minute appointment isn’t easy.  By the end of the appointment, it was agreed that he will refer me to occupational therapy, write to Professor Sharrack and prescribe medication to address my fatigue and brain fog (assuming liver and kidney function tests are all good).  He also suggested I stay off work until the end of term. 

I have heard nothing further from Professor Sharrack and will find the energy to chase him again soon. 

~~ 🎄 ~~

Today I managed to fall down the stairs …I’m not quite sure how this happened, but I think my legs just gave way beneath me and before I knew it, I was on the floor at the bottom of the stairs!  

Luckily I only have bruises, but I must admit I’m feeling a bit shaken by the experience.  Steep Victorian staircases are not best ever for MSers it would seem! 

I have only lived in this house for a little over 2 years and I was obviously aware of the unusually steep stairs, but had no idea how much of a challenge they would become for me. I mostly go up them on all fours, which seems to work well. Coming down stairs is a different matter and I really don’t feel safe a lot of the time.

I’ll add it to the list of things to worry about! 🤪

~~ 🎄 ~~

You may remember a while ago I posted about Scott McCormick (From Gogglebox) undergoing HSCT at Hammersmith Hospital. Scott has been recovering well and has been keeping us all informed of his progress. He recently had an MRI scan – an insight into whether his MS has halted or not – today he got the results …

I am absolutely delighted for Scott. He has shared his journey on twitter and through videos he has made for MS-UK and the HSCT community has been following with interest. It has been wonderful to see him get better and better and to know that he is now looking forward to a happy healthy future with his family. I’m sure Scott will be a powerful voice for HSCT going forward and we are all very grateful to him for sharing his experience.

GoFundMe

103 We have made a decision!

It has been a stressful and emotional few weeks for me, which have come to a head this week and led me to make a decision.  

As you know, I have had the HSCT clinic in Russia on hold whilst pursuing the possibility of being treated in Sheffield, here in the UK. Today we made the decision to rebook Russia and start fundraising again.  Lots of things have contributed to this decision…

On Thursday I had a meeting with a psychologist who works with my team. Amongst other things, she has occasional meetings with us to advise about difficult cases and talk about anything that’s bothering us.  She is also a friend and knows about my health situation. I’ve been struggling the last few weeks, feeling very low, physically and mentally.  Anyway, we spent most of our time talking about it all.  It was so good to explain it all in words and acknowledge how difficult I have found this situation. She was so good at helping me to focus on what’s important and what I need to do. I think one of the reasons I have felt so down is that it feels everything is out of my control and all this waiting is really stressful … and I don’t even know what I’m waiting for! 

That evening I fell at home and really hurt my foot/ankle.  My leg gave way when I stood up and my foot kind of folded awkwardly under me.  It’s the first time I’ve had a bad fall at home and it really scared me (and terrified the cat!)!  It reinforced the realisation that I need to DO something now, before I get any worse.  If I wait for the Sheffield option to run its course, another 6 … 12 months or more could go by and it could still be a NO.

Apologies for the ugly foot picture!

On Friday I received a letter from Professor Sharrak’s  registrar, regarding the outcome of my MRI scan, which took place back in June. It describes numerous lesions in various parts of my brain,  but no active inflammation.  I’m not sure if any of the lesions are new, as I don’t think they’ve been able to compare to my last scan (which was at a different hospital).  Its worth mentioning that 4 years ago, I had no brain lesions, then some “tiny white spots” were found and these then increased in size and number between each scan. The letter is really unhelpful!  And no change to my appointment (5th Feb). 

I met with my lovely friend Anne on Friday afternoon and talked to her about everything – she told me how hard it is to see me gradually getting worse and how worried she is about me.  She felt that no one one would criticise me for planning to go to Russia as soon as possible, having a definite date to work towards and doing all I can to give myself the best chance of getting better.  

I spent much of Saturday with my children, Connor and Niamh.  We went for a walk and then for lunch. They are both worried by waiting any longer and want me to be treated ASAP.  Niamh has been terribly upset since hearing my appointment is in February and we all agreed we should focus on Russia and get me there as soon as possible. 

So that’s where I’m up to! 

I can’t tell you how much better I feel to have made this decision and to have the support of my family and friends. I am waiting for a response from the clinic with a date to work towards and will plan from there. 

What do you all think? 

We already have some fundraising plans brewing and some old ones to resurrect.  We are open to ideas, offers of support or anything else that might help …please get in touch with one of us if you have any suggestions. 

I want to say a special thank you to Sally, Anne, Connor and Niamh for helping me to get to this point this week and also to family, friends and colleagues for all your ongoing support 💚

GoFundMe

70 How to fall safely

Obviously the best bet is not to fall at all, but sometimes it just happens!  I experience a lot of near falls, stumbles, trips and bumping into things and sometimes end up with a few bruises.  

I take a few precautions to keep as safe as I can – using my stick, holding on to furniture, linking arms with whoever I’m walking with and staying focussed on what my feet are doing (even when I can’t really feel them!).  Despite this, I have still managed a few spectacular falls.

Recently I’ve been reading advice in “How to fall safely”.  The general advice is …

  • Protect your head and face
  • Bend your arms and legs and try to “stay loose”
  • Try to land on a fleshy part of the body (rather than on bones or joints) 
  • Roll with the momentum of the fall

I think I may have to practice, as most of my falls involve landing on my knees and hands …and really hurt ☹️ 

————————————————————

I have just added the following to the “Where to begin” page.  I’m aware that I have quite a few new readers so thought it was appropriate to update it …

31st January 2019

Its’s been almost 6 months since I wrote this first post. A lot has changed since then , so I though I’d add an update to explain …

Since August, my MS has continued to progress with no major relapses. I now use a walking stick daily and have been issued with a Blue Badge and work place parking permit. I have also reduced my hours at work in order to cope with my ever increasing fatigue.

My neurologist has left the country! He has returned to his home country of Malta and I have been allocated a new one. He has offered me Copaxone but I have declined.

I have decided that I want to go for the most effective treatment for MS currently available …HSCT (Haematopoietic Stem Cell Transplant). Unfortunately this isn’t widely available in the UK and I don’t quite meet the very tight criteria for treatment on the NHS. This could possibly change in the next few years but I don’t think I can wait that long.

After much research and discussion with my family, I have decided to go abroad for treatment. I am booked to go to a clinic in Moscow on 23rd April. The clinic is experienced in treating MS patients and has an excellent record in terms of successful outcomes and patient safety.

The cost of the treatment, flights and visas is around £40K. We are working hard to raise the funds and will borrow if we have to so that I can make that date in April.

There are lots of posts in this blog which explain this in more detail, so feel free to browse and search.

Thanks again for reading 

GoFundMe

8 Walking sticks, trecking poles and hand rails

It took me perhaps a little longer than it ought to, to get myself a walking stick. 

My balance has gradually deteriorated over the last few months …at first I didn’t really notice, then I was in denial, then focussed my efforts on hiding it …this was all pretty exhausting.  Some days, just staying upright or walking in a straight line takes so much effort and concentration that I have little energy for anything else! 

So I bought myself a walking stick. 

It took a bit of getting used to at first, but using it has increased my confidence and taken a little bit of stress out of daily life.  Of course, until I have my walking stick lesson, who knows if I’m actually doing it right?!

Although I accept that my mountaineering days are over, I very occasionally like a slightly more challenging walk and for this, I have recently bought some trecking poles.  Yesterday I had the opportunity to road test them for the first time.  When I say “road” test, I actually mean “wobbly path, uneven ground, random slopes, tree roots and torrential rain” test …the trecking poles were great!  Usually I’d need help walking on this kind of terrain but yesterday I managed the whole walk on my own (well, almost!). Thank you Connor, Sophie and Odin 💚

So, what have I learnt from all this? …it is better to make adaptations that will help me get on with my life, rather than resisting these options and doing less.  

I saw my MS Nurse recently and she offered to refer me to a service who will come and assess my needs at home, with a view to providing handrails where needed.  A few months ago I would have totally rejected this idea but now realise this is a good thing.  I had a bit of a fall down my stairs a few days ago and still have the bruises …improved handrails definitely needed! 

3 Falling down

At the moment, my worst MS symptom is loss of balance – this makes life very interesting and stressful in equal measure.  I am continually bumping into things, falling over and can barely walk through a doorway without bouncing off the sides! I seem to be covered in scrapes and bruises but so far, have thankfully managed to avoid serious injury.  I’ve had one embarrassing incident when a very tiny elderly gentleman helped me to me feet and I had to try very hard not to pull him over.  Yesterday I managed to crash on my derrière right outside my front door  (lots of padding there, so I was fine!). So if you see me staggering about, weaving from side to side and occasionally holding on to things, I (probably) haven’t been on the gin and am just having one of my wobbly days.
Disability in MS is measured using the Expanded Disability Status Scale.  My neurologist has put me at 4 (from 2 just 12 months earlier).