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Dealing with “hidden” MS symptoms and how sharing can help.

Thoughts by Caz Blake-Symes, Member and Trustee

As anyone living with MS or any neurological condition will know, there is no “rule book” to tell you what will happen, if, when or how.

For a start, not all of us will have every potential symptom, some may have lots of the symptoms mildly and others just one or two symptoms severely. To say that living with a chronic neurological condition like MS is unpredictable is an understatement, to say the least!

Many of us have obvious symptoms which others can try to understand, for example, if you use a rollator, a wheelchair or walking frame, people can see the disability. If the person with MS has slurred speech, friends and family get used to it. However, others, for example shop assistants, waiters and taxi drivers may not try to understand, and I know some have even been accused of being drunk!

All to often it is the so-called hidden symptoms that are the most difficult to deal with. At the top of this list of undesired symptoms to live with come bladder and bowel issues. Living with the dread of leaving the house without being padded up and dehydrated and still having an accident is thankfully a situation that most “normal” people don’t have to worry about, so the comprehension around these issues is less. If this is a concern, this can potentially rule your life.

Incontinence is just one example, fatigue, anxiety, fear of the unknown and lack of independence are also common “non-visible” symptoms.

Being part of the Brightwell Community can elevate many of these fears and in many cases the actual symptoms.

Let’s look first at the practical and physical aspects. The whole building is fully accessible, with three accessible w.c. facilities. Each loo area is large and well-equipped, including hoists, and one has a full shower area.  How many times have you gone to a so-called accessible loo to find you can’t get in, especially in a larger electric wheelchair!

I recently went to a local 4-star hotel/restaurant, having been told that it was fully accessible. When I got there, the accessible entrance was through a closed fire door and the accessible bathroom was being used as a storage room! The staff had to move two metal beer kegs for me to get to the loo! Needless to say, after a strongly worded complaint, it has now been sorted.

I’m sure others have similar stories to tell!

Once safely in the Centre, the therapies on offer can help with both physical and mental health needs.

Over and above the key therapies of Hyperbaric Oxygen Therapy and Neurophysiotherapy, there are also a number of specialist therapies and clinics including, counselling, massage, reflexology, foot care, acupuncture, Citizen’s Advice and Bladder & Bowel support.

The greatest asset The Brightwell has; is its people.

On a personal level, I feel completely comfortable talking to any of the staff, volunteers, and other Centre Members.

As we are all in the same boat, there is a level of understanding and compassion found across the Brightwell Community, that is rarely found elsewhere. I know from my point of view; I don’t want friends and family to feel sorry for me, nor treat me like I’m ill. At the Centre, I can be completely open and honest about living with my MS and the resulting issues.

Here is a great example of how I was recently helped and supported by other Centre Members. After seeing my neurologist in January, she suggested the possibility of me having a suprapubic catheter (SPC). I have been fortunate to have had three previous bladder Botox procedures quite successfully. However, despite this treatment, this still meant I needed to plan my days well in advance, and I was too often dehydrated.

I had a very frank supportive chat with two friends at the Centre, both have SPCs. These conversations would not have been possible in any other circumstances. The fact that we all share similar issues, and the Centre lends itself to that sort of conversation, was a major benefit to me.

As it happens, I had further Botox and medication but when the time comes for an SPC, I will be confident, knowing the facts, possible issues and more importantly the benefits, after learning so much valuable information. This is much better than being given a leaflet!

So, if you are feeling alone, concerned, anxious or have any worries whatsoever, the Brightwell Community is here for you.

If you need to talk to a therapist, a fully qualified oxygen operator, someone who can signpost you for financial or legal support, there will be someone to assist. Likewise, if you, or your partner or carer would just like to have a good chat with some who understands and cares – the Brightwell is the place!

As a bonus you can now get a great cuppa at the same time!

See you at the Centre soon.


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