Tag: New Year

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

136 New year, new blog post


Happy New Year everyone. Thank goodness 2020 is over – it has been a dreadful year all across the world and I don’t feel I can begin a new year blog post without first acknowledging the huge loss and suffering the COVID-19 pandemic has caused to so many. Over 1.8 million lives have been lost to the virus worldwide (over 73 thousand in the UK), with many more left with debilitating health problems and organ damage following recovery from the virus itself. 

Another consequence of the pandemic has been the numerous lockdowns and other restrictions we have all had to cope with for many months. The practical impact and mental health consequences of this have been enormous and it’s going to take us all a long time to recover.

But 2021 is here at last! The start of a new year always brings new hope and perhaps resolve to work towards a better future. This is how I’m choosing to view today.


I have discovered a lot about myself this year.  Perhaps enduring long periods of solitude forces us to look inward and to question things more.  I have found that I am more self sufficient than I thought and despite having many down days, I have managed to pick myself up and do something about it.  Perhaps the greatest thing I have learnt is that it is no use hanging on to things/situations that no longer serve you, even if you believe everyone expects that you should. My two big decisions (taking ill health retirement and moving house) have come from this.  I realised I was putting all my energies and focus on to hanging on to my work and my home, but that both of these were causing me harm and leaving nothing for any other aspects of my life. I’m still very sad about both, but glad to have made these decisions and confident that I am doing what is right for me. 

It’ll be while until both of these come to fruition, so I’m planning to spend the next few months doing all I can to get myself ready.  Despite living alone, I have eaten and drank for too much over the last few weeks (stressful times often lead to comfort eating for me) … now need to get a grip! When your body doesn’t quite function as it should, carrying extra weight adds further stress to a messed up system. 


I’m not one for new year resolutions but by the end of January, I plan to be eating healthily, back in a proper sleep routine and moving a bit more.  And I still have a lot of sorting and packing to do too! Plenty to keep me busy. 

The other thing I have realised during this year of lockdowns, is how important people are to me, well, actually I already knew this, but this time of reflection has doubled me belief. We don’t need lots of “things” in our lives, we need authentic connection with people who mean something to us.  So, when life returns to “normal”, I’m going to focus on time with good people to help recover from this last year and invest in a better future. At this point, I’d like to say a massive thank you to friends and family who been such a great source of support. I’m not always good at staying in touch, but I do appreciate hearing from you and think of you all often.

Recent news of vaccine rollout has given us all a boost … light at the end of the tunnel at last! I think I am in group 6 on this priority list, so may still have some time to wait (but that’s fine).  


So I am starting the new year on my own, in England Tier 4 (lockdown by another name) with some feelings of trepidation, but mostly optimism for the year ahead, at least once these first few months are over. 

HSCT is still forever in my mind, although it’s obviously on the back burner for now.  The hospital in Sheffield has not resumed treatment for MSers since it was suspended in the summer; I am uncertain of the situation in London.  I know a few have braved the journey to Mexico over the last few months and others are going soon.  The hospital in Russia is continuing to treat a few patients, however, travel restrictions mean it is impossible to get there at the moment (if I understand correctly, the Russian authorities are not currently issuing visas to UK passport holders). 

I’d like to end by sharing a picture of a Facebook conversation with my friend Beth, who has recently learnt the art of Tarot reading.  This was the outcome of a little online card picker she set up.  Fingers crossed ??????

Take good care of yourselves and try to stay positive if you can.  If that doesn’t work for you at the moment, accept where you are and know that you don’t have to be strong all the time, just do your best to keep going (an achievement in itself when life is a challenge).

❤️

61 Happy New Year

After a couple of days feeling mentally and physically low, I am pleased to say I have bounced back and am now feeling much better.

I always struggle a little at this time of year.  I don’t tend to celebrate the new year and haven’t been out on New years Eve for years. The last time I did was in 2004, just after the end of my marriage and it was a complete disaster, which seems to have scarred me for ever!

I now find it much easier to stay in and do a bit of wallowing on New Year’s Eve!  I also try to do a bit of reflecting on the year that’s ending and think about what I hope for in the new year.  

In some ways, it’s all bit easier this year, I have one aim … to have HSCT and to work hard to optimise my recovery.  There is still a lot to do in order to get there …more fundraising, borrowing some money, arranging flights, visas and working out how all those offering to help can best support me.  But, I feel so very sure that I’m doing the right thing and this will keep me going over the next few months.

Yesterday I went into town, something I rarely do (I hate shopping!) and it was a bit of a challenge.  I only had a few shops to go to, but I struggled with walking so far and manoeuvring through the crowds.  Ok Stockport really isn’t that crowded, but I have been avoiding busy places for a while, so it seemed crowded to me! I’m so sick of these limitations on my life – popping into town for a few bits is now a major operation! 

Thankfully, I had planned to meet up with my friend Beth for coffee and cake, which was therapy as always …thank you Beth ?

Today I had brunch with Niamh, Rebecca, John and my gorgeous step-grandson, Albie …such a lovely way to start the day.

This evening I am watching TV, chatting to friends online, drinking gin and eating chocolate.  My pyjamas are already on and it’s unlikely I’ll still be awake at midnight! 

So, Happy New Year to everyone reading this. Thank you all for your support and kindness over the last year …it means such a lot to me.  It’s been a tough year health wise, but over the last few months I have come to realise just how much good there is in the world and for that I am truly grateful xx