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Yes they do all go together in one sentence. I never thought this would be a subject I would really openly talk about but thanks to a chat with the amazing @msgracefullnot via video call, I feel more able to open up and talk about my experiences.

Having a neurological condition (or 2) has knock on effects that vary from person to person so please don’t think that what has happened to me will necessarily happen to you.

As you are probably all aware by now I have Transverse Myelitis and Relapse-Remitting Multiple Sclerosis. Both have similar characteristics although I have 3 areas that led to the diagnosis of these conditions.

Transverse Myelitis was diagnosed in Jn 2016 after having an MIR scan that showed a complete lesion across T1 on my spinal cord and an incomplete lesion at C3. The lesion at T1 has caused me to lose all sense and feeling from my bra line down meaning I cannot feel my legs or feet and I have no awareness of my bladder or bowel.

The incomplete lesion at C3 has caused alters sensations in my arms, specifically my right side,leading to pins and needles and numbness.

9 months after my TM diagnosis I was diagnosed with RRMS. This was confirmed after numerous blood tests, lumbar puncture and another MRI with contrast. Tbis highlighted that I had 3 subcortical white matter lesions that were active along with a number of non-active/scar like lesions across the white matter of my brain.

The combination of all these lesions has lead to me having lost the ability to walk and also long standing problems with my bladder and bowel.

As a parent I’m used to talking to other mums about poo and the like so sharing my personal experiences will either be a breeze or a major disaster so please bear with me.

When I first lost all my feeling it happened over a few hours starting from my thighs down and worked it’s way up to my bra line. It was an incredibly scary time. No-one knew what was happening and it drove me crazy. Whilst I was in A&E it dawned on me that I hadn’t actually passed urine in 4 hours and I was resembling a beach ball as my bladder filled and for some unknown reason (I know now) I had gone into urinary retention. I had a 14fr foley catheter inserted to drain my bladder and I was gobsmacked to see nearly 2ltr of urine empty into the bag at the side of the bed.

Over the course of my stay on the Neuro ward I was introduced to a flip flow valve, which when inserted into the end of the catheter, have me an element of control over when I emptied my bladder irrespective of whether I had sensation. Most days I would go through something known as Bypassing, where the bladder empties from around the catheter and caused me a huge amount of embarrassment and loss of dignity. Here I was, a grown woman, wetting myself left right and centre. I just had no idea when my bladder was full and would end up having these incidents time and again.

Once I was transferred to the Neuro Rehab Unit I was encouraged to slowly lengthen the amount of time that my flip flow valve was left closed but no matter what I did I just kept bypassing. At one point the doctors wanted to remove my catheter and have a 2 day trial without it (known as TWOC- Trial Without Catheter). I clearly had a lot of anxieties about knowingly wetting myself and having to try and carry on with therapy and social meal times during the trial. I ended up in an hysterical mess which in itself caused more bladder spasms and more frequent periods of bypassing.

I went from wearing normal feminine underwear to big granny pants with discreet pads to then wearing large Tena (other brands available!) high absorbancy pads in a short space of time and began really hating how my body was treating me and why couldn’t I just go for a wee like everyone else.

To add to the humiliation I became doubly incontinent and started having accidents with my bowels. Again due to having no sensation or feeling I would either become constipated, causing palpitations/reflux/nausea, or I would go the other way and pass stools unknowingly and have to face being cleaned up and changed by members of staff. With a lot of time spent sitting on the loo O did manage to get some kind of routine going but it was 50/50 as to whether I would be successful in opening my bowels when I tried.

I can tell you now that 2 years on I still feel utterly humiliated every time I wet myself or have accidental bowel movements, more so embarrassed when I have to ask my husband, or someone else (even my sister in law has helped) to help clean me up.
Just under a year after having my foley Indwelling Catheter (IDC) inserted I was referred to the urology team at University Hospital Southampton Foundation Trust (UHSFT) to discuss what had happened, been going on and where we went next with managing my bladder issues.

The consultant was absolutely brilliant. He listened to what had happened from my perspective, discussed the causes -TM & MS and how the lack of signals through my spinal cord had caused my body to no longer recognise that my bladder is there, and then moved on to what would be the next step.

To say I was shocked by his recommendation would be an understatement. 1st be offered to insert a Suprapubic Catheter. Tbis is where a surgeon creates a hold through your abdomen (normally around your pubic bone) and pass a foley catheter straight through to your bladder. Tbis would mean no more tube hanging down my leg, no more lack of dignity in changing it and a much better option as I am a full time wheelchair user and would save getting caught in my wheels. This suggestion alone had me smiling inside. I hated my IDC with a passion but it was a means to an end.

His next suggestion completely threw me out as it wasn’t something I’d ever heard of in this use. He suggested that I was a suitable patient to receive botox into my bladder to try and stop the spasms and reduce my chances of bypassing urine through the usual route. BOTOX!!?? I only ever assumed it was used for cosmetic reasons and was very costly yet here was a kind urologist offering to use this expensive medication to help me in a way i didn’t think possible.

I jumped at the chance to have both procedures done and was put on the waiting list for one of the clinics. We decided there and then that I would have the whole lot done under local anaesthetic due to my lack of sensation and it would mean I’d be home within hours.

It was 8 months before my appointment came around and in that period of time between the decision and appointment I had my IDC fall out 5 x in 8 weeks with the balloon fully inflated. I can assure you it was a pretty scary sight seeing a whole catheter fall out followed by a flood of urine that never seemed to stop! God only knows how many times I called out my District Nurses to come and reinsert a New catheter at varying times of dy and night,or for them to come and give me a bladder wash out because my cathermter wouldn’t drain properly. I gave up feeling embarrassed as it happened all too often.

The day I had my procedure done couldnt come soon enough and desire the fears of being awake I was feeling positive about how my quality of life was about to change.

I watched on in amazement as the surgeon injected the site of the new catheter and my bladder with local anaesthetic and both hubby and I spent the whole procedure laughing with the HCAs whilst they delicately injected my bladder 17 x with botox. It was fascinating watching this needle delicately inject me through a scope with such precision and delicacy

The next part I couldn’t watch. The part where the surgeon pushed an enormous needle through my abdomin into my bladder follows by inserting the foley catheter. Admittedly they couldn’t get it in exactly the right place due to my 2 previous caesarian sections so he had to put it in the fold of my rather expansive belly. Not ideal as its a moist area but it was in and draining like a dream.

I haven’t regretted that decision once and am waiting for my next botox session as my bladder has started fighting against me and I’m having small bypasses regularly throughout the day. I feel like I have my dignity back with regards to my bladder situation.

Now my bowels! They really are causing me a lot mental anxieties.

Due to being on a lot of medication, most of the professionals involved in my ongoing care, at one time or another, have introduced some sort of laxative to try and regulate my bowel movements. Despite trying to self regulate and spending 3+ months on iron supplements, I have found it increasingly difficult to prevent constipation and I’ve ended up really bloated (looking like I’m 9m pregnant- and yes people have asked me when I’m due!!)

This is embarrassing enough without then adding in the humiliation of pooing myself with no knowledge of it and having to rely on people to have to clean it up. I think I’d rather have the constipation over the accidents and it’s something ive never really come to terms with. This admission has helped with trying to find a suitable toileting pattern and a discussion with my consultant lead to me having all laxatives removed and told they’d let me go max 3 days without a bowel movement and then I’d be given something gentle and subtle to encourage a motion.

So far no accidents and a BM a day/every 2nd day. I’m happy with that and just pray that when I go home this pattern continues and I don’t have to go through the humiliation of asking my husband to clean me up.

It intrigues me how differently all these professionals approach both subjects and I know I am just one in thousands who go through this but I’m glad i have the trust in my consultant to do whats best for me and not the text book approach

Enough potty talk now

TTFN

That is a big question and one I feel needs addressing, not just for me but for everyone going through a tough emotional time. 

How many times have you crossed over the road to avoid having to talk to someone you know who has been through a traumatic time?

How many times have you avoided eye contact with someone because you don’t know what to say with the knowledge they are having a tough time?

How many times have you skipped past a person’s number in you contact list because you think they wont want to join you and others on a night out?

Have you thought how these actions may be perceived by those going through their nightmare? How they may need some normality and a chat about nonsense? 

Since I fell ill 2 years ago I’ve noticed happening more and more frequently.

When I got my first diagnosis and was in hospital for 4 months I noticed that the number of calls and visitors started to dwindle away during that time. By the time I was discharged, with my new mode of transport  (my wheelchair) I realised that I was only being contacted by the same 2 or 3 people who had been there for me since day 1.

Over the 2 year period between the admission and now I became very isolated, I put my hands up and accept that’s how I had become, despite me asking people if they wanted to pop over for a cuppa/coffee and a chat. I noticed people would make promises of ‘ Im busy this week but one day next week’ – next week has never come and it’s really knocked my confidence and made me feel like I have no worth.

Since my admission in October I’ve again had very few calls, messages and visits and it’s made my days very long and at times have felt very lonely.

I know that people have families, work, extra activities etc but when you see on social media that the people who promised to pop in for a cuppa have gone out with other friends you’ve invited round as well, it makes you question just how much you are valued as a friend and an human being. 

When Ive asked friends if there is a reason they dont come round, avoid eye contact in the street or on the school run, all I seem to be told is 

‘I don’t know what to say to you’ 

‘I can’t handle it’

‘I didn’t think you’d want to join us’   

I want to address these few statements in particular, not just from my point of view but from others I’ve spoken to who have been through various different crisis 

1. Not knowing what to say is a very normal and typical response from people when they are face to face with someone going through some of the hardest times in their lives. Heck I’ve had times when I’ve not known what to say to a friend in truly sad/life changing times but Ive acknowledged the fact that there is never the right or wrong thing to say and actually all people want, me included, is to talk about anything but the situation. I love hearing how a friend is getting on in their new job or how the kids are doing in their new school or even less meaningful discussing the latest celebrity gossip and soap news. Simple chit chat makes me feel involved, valued and I love a good old gossip. It makes my problems drift away for a bit and makes me feel relaxed.

2. When ive challenged people before about why they’ve been avoiding me ove had the statement ‘I can’t handle it’s thrown at me and it’s never made me feel so upset. In my opinion myself and my family members are the ones struggling to handle what’s happened and we dont have time or the energy to worry about whether others can ‘handle it. You don’t have to wake up to it every morning and face it all day long. You don’t have to hold yourself together for your families sake and try and support them. Your life hasn’t changed, you can carry on with your every day life knowing you did your best that day. 

Personally I wake up each day and worry about how I can take pressure off of my husband and children by being as independent as possible yet knowing I need their help with standard every day tasks, I lie in bed worrying each night abouy whether i could have tried any harder in my therapy or could have done something differently. I’m the one that has to handle it not you and I admit I struggle every day to do that.

3.  I’ve been told so many times in the past few years ‘I wanted to invite you but I didn’t think you’d want to join us.’ What on earth made you think that? Is it not my place to say whether I’d like to join you for a meal or attend a birthday party for your child with my children? Do you not give your other friends the option as to whether they attend or not? So why not me? Just because I’m in a wheelchair doesn’t stop me from joining you in a restaurant to celebrate a birthday. It’s my legs that don’t work not my mouth or my arms. I do still have a voice and as I’m told rather frequently it can be rather loud at times!!

I just want people to treat me like any other person. I wish I could turn back time and stop what caused tbis but i can’t but that doesn’t mean I deserve to be treated any differently to your other friends.

It makes me feel less valued and after years of being there for others I find it upsetting and hard that others don’t want to be there for me.

I know there are people who fully agree with me and there are others that won’t but i wanted to put it out there that we all just want to be treated as equals and feel appreciated and valued. Do we not all deserve that in life? 

So all I ask is that when you say to someone you’d love to join them for a cuppa or coffee please make sure you do – there is plenty of gossip to go around out there! 

My final thing to say is please don’t cross the road or avoid eye contact with someone for fear of not knowing what to say. A hi and how are you won’t automatically lead into all a person’s problems but will most likely make their day that someone has acknowledged them.

Right time to get off my ramped soap box and locate my cup of tea 

TTFN

Today has been one of those days that you wish You could start all over again. 

I didn’t sleep well due to my usual washing machine thoughts plus really bad pains in my right arm, that had me calling out for pain relief at 5am. I’ve not had to ask for pain relief in the night for a while now but it became unbearable so suddenly I didn’t know what to do with myself.  

My spin cycle of a brain had already kept me awake until 2am so I was pretty frustrated and upset that the pain had gotten the better of me and I just felt so flat.

My emotional side has had my thoughts running riot the past few days and I think it was down to two specific things

• The daily challenge with the rotunda
• My Goal Planning Meeting/ Discharge Planning

The on going battle with the rotunda is really getting to me and I feel useless and pathetic when I think about how a simple piece of equipment is ruling my emotions and state of mind. It’s a piece of metal that turns round. That is all. A simple piece of equipment That I stand on and hold on to while someone turns me 90° so I can sit in my chair or on the bed

 I just can’t get my head around it and if I don’t get my head around it pretty sharpish I run the major risk that I might not be able to go home. 

I want nothing more than to go home and be with the boys, hubby and fluff monster,  so I know I have to tackle this fear head on and win to be successful. It’s been agreed that I can focus on using it when I’m at my most alert then I can build up my confidence and start using it when I am exhausted. I need to know I can do it safely at all times of day before I go home as I will have carers helping me with my transfers and I dont want to be putting anyone at risk. 

I’ve had one of my rotundas from him brought in and to be fair it seems much sturdier although it does seem to require a lot more effort from the carers point of view. 

I did however manage to use it 3x today without such an horrendous urge to want to be sick or pass out. It really does seem pathetic being so terrified of a piece of metal!

The next issue that had me restless and anxious was the thought of my Goal Planning Meeting that was held yesterday.

I’m not sure if I’ve mentioned what a Goal Planning Meeting is before so bear with me.

GPMs are held every few weeks for each and every patient with the some aim of setting realistic targets whilst working towards a major goal. Normally these will be attended by 

• The patient
• Patients relative/representative 
• Key worker
• Physio
• OT 
• Social Worker
• Neuropsychologist
• Neurorehabilitation consultant
• Specialist Registrar
• And any other relevant party.

 Now my most recent meeting yesterday was attended by myself, Physio team leader,OT, Social Worker, Neuropsychologist, Neurorehabilitation consultant and Specialist Registrar.

Sadly Paul couldn’t attend and my key worker was held up for the duration.

The primary aim of this GPM actually turned into a discharge planning session, which I wasn’t really expecting. 

The physio lead the meeting and started off by talking about how I felt things were going and talked about any concerns I had  (yes the damn rotunda was mentioned!) 

I made it clear that I wanted to keep practising with my pivot transfers and they give me a little bit of independance unlike the devil machine and having to rely on others to help me. This was fully supported although the importance of using the rotunda was reiterated and I accepted that, with the right people, I will continue to practice it and try and conquer these all consuming fears.

Next was dicussed what level of support I am going to need once I get home. One thing I am adamant about is that under no circumstances is Paul to be counted as one of my carers. I know I married him ‘ in sickness and in health’ but I do not want to blur the lines between relationship and caring. 
The SW said that 6 wks of care has already been allocated and will start from my arrival home. These will be 4 x 1hr viistsat mutually convenient times and when i will most likely need it. This in its self has been a huge hurdle tooverome emotionally as4 months ago I was fully able to care for myself and having to let go of such a personal level of independance has been the cause of many tears. 

It sounds completely ridiculous to sort about such a trivial thing but I have lost so much of my hard fought independance and I’m honestly struggling to my go. 

The neuropsychologist then gave her input to the meeting and explained how , despite not having known me all that long, that she had encouraged me to start writing down my thoughts in an effort to curb my ‘spin cycle’ moments at night and try and get rid of some of my pressures on to paper. She was pleased to know I had restated writing in her and was hopeful that I’d find it easier to switch off at night.

The doctors brought up how I’d had a previous goal of attempting to reduce down my extra doses of oramorph but had been unsuccessful due to a number of factors, the main being my pain levels post therapy. It was agreed that I had enough going on already without having to try and reduce that as well and we decided I could try again in a few months. 

I did say to everyone that I was finding the change in my condition quote emotionally draining and hard to accept. Having to face the reality that I’ll never walk again and be dependant on others for the rest of my life is really difficult to get my head round and I need time to process it all.

One of my main worries is that my eldest son my feel compelled to help me all the time and it’s not something I like the thought of. He is already a young carer to his little brother and no matter how hard we’ve tried to protect him and give him the childhood he deserves, he has still ended up being a carer. It terrified me that I may have to rely on him when there is no-one else free to help and I don’t know how to stop it from happening. He is a very knowledgeable 11 nearly 12hr old and has done so much more than most adults would hve to deal with in a lifetime. I guess only time will tell just how much he’ll need to do to help but i know i must do my best to minimise what he will do.

The meeting ended with a discharge date being set. I don’t want to put what it is here as i am cautious that anything could happen in the mean time to change it and I don’t want to get peoples hopes up. 

So it’s onwards I go into the continuing battle with ‘It!’ I will succeed, I have no choice but I’m used to fighting battles and this one is no different.

Time for bed now and hopefully a decent sleep as I have a 09:00 physio session thag I’ll need to be awake for! Oh joy!!

TTFN 

I just can’t stop my head from over thinking things and its driving me insane!!! 

It’s 02:30 and for the past 3 hours my brain has decided to run through all my worries at the rate of a washing machine on a 1400 spin cycle! 

Why now??? Why not when I’m sat watching TV or when I’m having a wash??? Why is it always the split second I get into bed? It really is getting very frustrating, not least because I’ll be moaned at by the nurse in charge in the morning for my tired state but mainly because come the morning it’ll go back to its slow trundle along and leave me drained mentally and physically. 

I’ve gotten used to the subtle spinning of my anxieties and general concerns but this over night rollercoaster is driving me bonkers. 

People say to me that my blog posts should be all sweetness and nice but right now that isnt how things are and as much as i would like to be all positive and happy, I just can’t be in that place right now.

I know I am over thinking things and I am focusing on the ‘what ifs’ and not the here and now but it is impossible to switch off these all consuming feelings and they are really hurting my already tired mind.

Most of what I am worrying about is out of my control and I think that is why it is bothering me so much. I’ve lost the ability to be in control of my life and I dont know how to let go or how to break through the feeling of loss and uselessness.

I don’t think there is any right answer on how to achieve this other than writing it all down here and praying that it gets easier as time passes. 

I do wish though that this spin cycle would pack up and give my brain a rest so I can at least get some sleep before I take on the week with a new approach and face my feat or the bloody rotunda head on. 

Oh well time for decaffeinated tea and some sleep. Maybe I’ll listen to some music to try and distract me from the damn thoughts 
Nighty night folks 

This past week has been an eye opener. A week I would like to kind of forget.

To say it’s been an emotional week would be an understatement. I’ve cried so much I’m surprised I am not permanently red faced with puffy eyes. Emotions seem To have got the better of me and all I want to do is biry my head in the sand and come out when it’s all over 

None of my tears have been due to staff on the ward but, in the most part, due to me having to accept a bit of a reality slap in the face and I don’t think I was quite ready for it and boy did it hurt.

There is nothing right now that I want more than to be at home with Paul and the boys but it needs to be safe for everyone not just me.

I started the week reasonably upbeat for me after having a giggly night sat night with one of the other patients who, by the power of her smile and her true understanding, has lifted me up on some of my toughest days. 

I took on Monday with a refreshed outlook and really put everything into trying to transfer from my bed to my chair and back using the pivot method. It is incredibly hard work trying to move your body from one place to another using your arms to lift you and move over whilst trying not to miss my wheelchair or the bed when I need to pause briefly. I suffer from the little known condition of ‘short armitis’ so I can’t make my transfers as smooth as I’d like. Being short really does have some disadvantages sometimes!

So I then rolled into Tuesday absolutely shattered as I hadn’t slept well due to stressing over what I was going to be doing in the morning. 

It was time for the dreaded home visit. The time in your admission when you go home with a Physio and OT and look at all th stinking stumbling blocks that will hold up discharge home. 

The last time I had a home visit in my 2016 admission, I had a complete meltdown due to being unable to bum shuffle up The stairs (‘short armitis’ strikes again!) My parents came to my rescue and to save me added stress they purchased a stairlift to get me up and down the stairs with minimal effort. The humiliation and sense of failure I felt that day still haunts me and remembering all of this was making the home visit a very nerve-wracking emotional time. The therapists who accompanied me home were so lovely and knew I was dreading it from the second I woke up. 

When I got home I was pounced upon by the dog (Finn) and it was so nice to have that slobbery cuddle before having to face my biggest fear . The stairlift looked like an impossible target but I knew I had to try my hardest to get my bum onto that seat to enable me to get upstairs. After much cursing and a lot of self-critical thoughts, I made that first attempt to get from my wheelchair onto the stairlift seat. What was an every day normal task prior to admission suddenly became the biggest mountain I’d had to date. With the physio one side of me and the IT behind me I managed to push myself up just high enough to be able to perch on the edge of the seat. I then managed to wiggle back and off I went up the stairs for the firat time since October! A huge feat in itself but my moment of feeling proud vanished in the blink of an eye when I reached the top and reality slapped me in the face incredibly hard. Facing the stairlift was the open door of my eldest son, Adam, bedroom. It was seeing this that I suddenly realised that I wasn’t going to be able to tuck him into bed again, not be able to give him a kiss goodnight or poke him to wake him up for school. My inability to be able to take a few ‘simple steps had been wiped from wiped my skill set. I had to suck it up and try not to show my crumbling emotions to Paul and the therapists. 
I then had to make an attempt to use a pivot transfer from the stairlift to my new mode of transport upstairs, the glideabout commode. I felt humiliated, let down by my own body and had to fight back the tears whilst trying to swing myself around, with the grace of an elephant, onto the seat of the commode – which decided it didn’t like me and shot off backwards.
I was then pulled into my bedroom and thankfully was given a breather and didn’t have to face another transfer. Although I could have done with a rest on the bed after all of that!
I then had to do it all in reverse to get back downstairs and get back into my chair. It was at this point that the decision was made to get 2 pieces of equipment  (rotunders), 1 for each end of the stairlift. 

This piece of equipment is a totally new method of transferring for me and in all honesty scares the living daylight out of me. 

It involves me having to place my feet on the base plate where the grey footprints are and then with every ounce of strength I have to pull my self up to standing using both arms and relying on my legs to actually hold me upright. My right arm is nowhere near as strong as my left and I really do not trust it to pull me up on a piece of equipment that wobbles around like a weeble board. 

As you all know, I have no sensation or feeling in either of my legs and in order to use the rotunda I need to rely on my legs to hold me in a straight position and not give out on me. I am finding this incredibly difficult to get my head around but I know that if I do not master this when both fully awake and tired then I won’t be able to go home and the alternative options are a definite NO in my head and heart.

On the ward I have started to use it but I end up in such a state that I don’t breathe when I pull up or whilst o am on the motion of beinh turned 90° to sit in my wheelchair. It really makes me panic which I know it shouldnt. 

I’m terrified I’m going to fall and then all the horrifying thoughts of ‘What if I fall here in hospital?’ ‘What if I fall when trying to transfer downstairs at home?’ ‘What if I fall at the top of the stairs?’ Once these thoughts start whizzing through my head I panic more and then I just end up shutting my eyes and praying that I survive without a fall. 

The majority of the staff are so understanding and help me when I am at my strongest to do the best I can but they recognise that when i am tired I just can’t do it safely and in all honesty I don’t think they need any additional paperwork to be dealing with if I fall.

I have said that I would much rather be confident and at ease during my strongest times before tackling it when I am tired and more at risk. I know I need to be able to do it in both situations but there is time for that. 

Anyhow the majority of my week is been spent sleeping, doing physio and keeping company with another patient (Wendy) who I have had the greatest pleasure of coming into my life when she did. It sucks that anyone should have to use this amazing facility but we’ve really clicked and become good friends.

I really should spend more time learning how to use this blog platform. I’ve just spent 20mins trying to work out how to get rid of the blue quote background!!! That’ll teach me for not using it enough!

Any way I have had a few positive moments in the week. My lovely friend Mel came and took me for a mooch around Tesco and my friend Sharon popped in after seeing her aunt (Sharon lives in London and we met when I was on D5 at UHS and she was caring for her aunt Dee who was opposite me). 

She bought me a beautiful Orchid to cheer me up. I’m just hoping I don’t kill this one like I’ve killed my other plants (I certainly don’t have green finger!!)

Anyway this week is a new week. I’ve got plenty of physio, a hospital appointment for an abdominal ultrasound  (to investigate the lesion/haemotoma on my spleen), a goal planning meeting to see where we are all at and see how social services are getting on ‘re carers etc and then hopefully visits from my babies and hubby as I’ve not seen them this weekend due to Lewis being poorly & back on oxygen.

Time to sign off and go and bury my head back in the sand until Monday morning.

TTFN 

#ostrichinthemaking #buriedhead #realityslapintheface #MSSUCKS #transversemyelitissucks #TM&MS1vTrish0 #rotundercannotbeatme #toomanyfightsnotenoughenergy #whyisitsotough 

Well maybe they have a bit but as I type I am back on the Snowdon Neurological Rehabilitation Unit where I first began this blog 2 years ago. 

I’ve not written for a while, mainly because life has kept me busy but also due to me not being able to put into words the feelings, events and emotions that have whizzed through my brain like a washing machine mid spin!

The last time I posted I had just been diagnosed with MS at an appointment with the specialist neurologist in UHS.

In the months that followed I spent a lot of time researching, reading, attending information settings and ultimately making the decision to start taking one of the many Disease Modifying Treatments/Drugs (DMT/D) to try and increase the amount of time between relapses and help shorten the recovery time from them.

After reading through all the information available on the MSTrust website and discussing with Paul I made the decision to starting taking Betaferon (one of the few Interferon b drugs). This involves me self injecting every other day into various sites on my body. I feel like a pin cushion and likely to spring a leak should I drink too much! My medication is delivered once a month by courier and I was taught how to draw it up and administer it by my lovely local MS specialist nurse. 

I have to have 6 monthly bloods checked to make sure there are no adverts side effects and have regular contact with my nurse should I have any concerns. 

Before I started the medication I had to have routine bloods taken and the results showed I was seriously iron deficient anaemic and had to be put on high dose iron before I could start the betaferon. There is nothing nice about iron tablets I can assure you!

In Dec 2016 I was also seen by a urologist at UHS as I still had an indwelling catheter  (IDC) and was told that, taking into account I am a wheelchair user, I should be referred to have a Suprapubic catheter fitted along with botox into my bladder (who knew it – botox for free, shame not elsewhere!) 

It took a further 8 months for me to have the procedure carried out at UHS and (despite the horror stories I’d heard) it was pretty plain sailing. I had a local anaesthetic, even though I still have no feeling or sensation, and watched the whole thing take place (except the big needle making the stoma site)

It has made life so much simpler as I no longer have it randomly fall out and it is easily managed in my chair. 

I had a relapse back in June/July which knocked me for six. I lost power and use of the right side of my body, which made self propelling a bit of a nightmare! I felt very let down by my body during that period of time and lost even more confidence in my own abilities due to needing extra help. Luckily high dose steroids and some help from the CNRT physio got me back to a bit of normal me. 

Bumble forward to October 2017 and things went pear-shaped. I was taken into hospital with exaserbated asthma. I had an emergency CT scan which thankfully ruled out any blood clots but highlighted that I had multiple rib fractures at various degrees of healing as well as a 14mm haemotoma on my spleen. I was then diagnosed with Parainfluenza and then 3 weeks later was diagnosed with RSV on top. Sick to death of viruses I can tell you!

After 6 weeks in UHS and not being moved other than to have personal care carried out I was referred to the Snowdon Neurological Rehabilitation Unit and thankfully I was accepted to be readmitted for a period of rehabilitation. 

I arrived back at SNRU on 2nd December and was greeted with hugs from a few of the staff who knew me 2 yrs ago. It made being on the unit again less of a scary experience knowing people and knowing what was expected of me and what I expected of them.

To start with I had to be hoisted for all transfers from bed to chair and vice versa. It’s not the nicest of feelings having to trust a piece of material to hold your weight (mine has shot up unfortunately and much to my disgust) whilst suspended from a piece of metal attached to the ceiling! 

The physios and staff here are bloody fantastic and spend a lot of time and energy helping you to overcome feelings like these and I slowly got used to it.

I had my timetable given to me and feom day one the therapists started looking at ways to get me transferring using various other pieces of equipment. 

Due to being laid in bed for 6 weeks, my strength in my arms and legs had deteriorated and I had to start building them back up to stand any cha ce of having successful transfers. With perseverance and a lot of help I slowly started to use the Stedy (A piece of equipment that you place your feet on, hold a hand rail and pull up to standing, then perch on paddles while moving to a chair/bed and lowering yourself down with control). I had to begin to trust that my legs would respond when pressure was put on them which is really hard to do when your brain doesn’t even know that you have legs attached to your body. Over 4 weeks (yep I was in here for Christmas!) the transfers got easier and I was able to do my transfers much more efficiently but still need hoisting occassionaly when extremely tired. 

One major thing that was noticed whenever I stood up was that my ankles overturned meaning all my weight was being distributed through my ankle bones and not the soles of my feet. This has become more and more of an issue and whenever I stand they cannot be corrected. This has lead to some very very upsetting, difficult conversations between myself, Paul and the therapists. Due to the way my ankles overturn it is no longer deemed safe for me to attempt to try to walk which has been my ultimate goal since admission. I will no longer be able to walk from my stairlift to the bedroom and vice versa meaning I have to face the long term issue of where I will sleep once home.

Not only am I now dependant on other people carrying out my personal care becaise of my exhaustion levels but I am facing having to have the garage converted into a bedroom for me with hoists and lots of equiment to enable me to continue to live in our house that is already adapted for our youngest son. How on earth do you get your head around something like that? We cant move for the reasons stated above, we own our own house which Paul has worked bloody hard to have. It’s where Adam is settled, minutes from his school and friends, it’s our home. 

I’ve always said I’ll never stop trying to get the best out of therapy and I never will but hen you are told that something so ‘simple as walking is unsafe and no longer feasible, how on earth do you move forward, stay strong and not become a mess? Ive cried so many times over this and can see no way to escape this and male my ankles magically do as I want. Splinting isn’t possible as the force my muscles give out to make my ankles overturn is so great it makes them cause indentations and pressure marks. 

I won’t give up trying to make life as good as I can. I have a family who mean the world to me and who I’ll never stop fighting for.

I am now at the stage of trying to do pivot transfers, using my arms to swing me from chair bed etc. It is incredibly hard work but it’s something I have to do to take the pressure off of others and gain some sort of independance and control back.

Next week I have a home visit with the lead physio and OT to try and see what can be done in the short term to keep me upstairs sleeping and how to make getting on and off the stair lift a real possibility.

It will be a tough and emotional day and i know tears will flow but i need to pull on my big girl pants and suck it up.

The fight carries on and as long as I have the love and support of my family I will bloody well continue to fight!

#tmandmswontwin #fightingformyfamily #tmandmssuck

Well Wednesday 14th September was the day I had my appointment with a consultant I’d never heard of. A consultant whose speciality is Multiple Sclerosis. After being told time and again by my lead consultant that we wouldn’t be getting any sort of diagnosis other than TM, I was wary as to what this doctor was going to say.

Paul and my mum came with me to University Hospital Southampton Regional Neurological Unit and when I was called through they gave me a reassuring squeeze and in we went. 

I have to say he has to be one of the nicest doctors I have ever met, and I’ve met a few over the years!!

He let us get comfy and asked how I was feeling. He was so kind and caring and I felt at ease so more able to ask questions without worrying I was being stupid. 

He asked if I had any new symptoms and went on to explain that yes I do have Multiple Sclerosis. I choked up a bit which sounds daft seeing as we’d all come to the conclusion that I had it. 

He seemed baffled as to why I hadn’t been diagnosed before now. Paul explained how many times we were fobbed off by my other consultant and that it had left me feeling more confused and kind of like been left hanging.

The doctor then said that it is clear as day that I have Relapse-Remitting Multiple Sclerosis and all my scans and tests showed this. 

He pulled up my most recent MRI scan from june, which covered my brain and my spine. You can clearly see the lesions at C3 and T1 on my spinal cord which is my Transverse Myelitis. Then he showed me my brain. Paul did the typical male joke of ‘oh you found your brain then’!!! Dr Furby then explained which we active and inactive lesions in my brain. I have 3 subcortical white matter lesions and a handful of others dotted through my brain. 

There has been permanent damage caused by these lesions and he said that they won’t get any better. 

So on to the next step. I am going to have to go  to am information session that is held by the specialist nurses and will discuss the pros and cons of the main front line drugs that I will have to start taking. 

These drugs are immunosuppressive and some are also immunoaltering. They will help my body to keep a distance between relapses and help my body recover from them as well. They will make me poorly and more susceptible to picking up bugs that are floating around. We totally forgot to mention that Lewis has colonised Pseudomonas, rota virus and adenovirus so when we saw his consultants later in the week we mentioned it and they all said they’d deal with it when we come to it!

So here the new path of my journey starts. I’ve got to learn many new things and deal with so much more than I already did. I’ll hold my head high (as best I can!!)  and tackle this head on. 

I need to be strong for my boys and my husband, especially days like today when, having over excreted myself going to watch Adams karate lesson, I have ended up feeling like a dead weight, struggling to see straight and hold anything in my hands. 

I need to accept what’s happened 

Can I ask you all a favour – don’t be scared of coming to talk to me and ask questions. I know it’s daunting but please don’t pity me. Ask questions but listen, properly listen to the answers.

I’m just as scared as you are, I’m only human. 

Please join me on my journey and walk with me side by side (I wouldn’t suggest in front of me I’ll run you over!!) 

The information below is copied for the MSTrust.org.uk website one of the many sites I’m doing research from.

Oh well off to bed I go. Need to rest these weary bones.

What is multiple sclerosis?

Multiple sclerosis (MS) is a lifelong condition that affects the central nervous system (the brain and spinal cord).

MS affects different people in different ways. In any one person, the symptoms can vary from day to day. It is not fatal and most people with MS live about as long as everyone else.

There is a wide range of possible symptoms. Some of the most common for people who are newly diagnosed are fatigue (a kind of exhaustion), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.

Not everyone experiences all of them

On Wednesday 14th Sept 2016 I have an appointment with the MS specialist at my local hospital. 

I have been referred to them as I haven’t made the progress that was expected of me.  

My most recent MRI scan showed no new lesions in my brain or C Spine which is good although I do have 3 white matter lesions in my brain. These lesions along with my blood and lumbar puncture results will hopefully give the Dr’s enough evidence to make a decision  as to whether I have MS or not. 

Now obviously I don’t want to have a disease/diagnosis that will dictate the rest of my life but it would give me answers as to why certain things have happened the way they have. It would give us the tools to start building a future based on facts and would mean we can then look at medications/treatments that will make life better. 

Nobody wants to hear that their life is going to change but given the right tools people can make a start on carving out a path for their future. 

Either way whatever is said we will keep on fighting and we will get through this!!!
So here is to Wednesday – the day my new path begins 

Well that’s total Croc!!!!! Pain is certainly not gaining me anything. Since Sunday I have been unable to use my right arm properly. It feels like a dead weight next to my body and when I move it I get shooting needle pain from top to bottom. It makes me feel physically sick and makes me want to cry when I try and lift it & self propel. 

I had physio this morning and I’ve been told that despite my pain there is nothing more that can be done for me. I’ve reached my limit for my recovery and that I’m being referred back to my Rehabilitation Consultant to see if anything she can do to help with the pain and lack of movement. I’m so fed up of being unable to do anything or achieve what I want to and what is expected of me. 

Until Sunday I could walk a few metres with my zimmer frame but now just moving my arm is so so painful & makes putting my weight through it to walk utterly unbearable. I hate how this illness can take so much away from me and how I can do so little for myself.  I may sound self-pitying, yes I am but I’ve had enough!! 

My stupid body is causing me to not make progress. I know people will say that I just have to make the best of a bad situation but I can’t accept that. I want to make progress. I want to be able to walk from the lounge to the kitchen and the wet room using my frame. 

What’s making it hard to do things is the lack of support outside of my family. I have a few friends who I’d be lost without but I’ve had no support from any organisation etc.  I’ve never felt more alone than I do right now. 

When I fell ill I was given little support emotionally by anyone involved in my care. Nobody told me I had a spinal cord injury until a friend spoke to a person from the Spinal Injuries Association. They were seeing her as she has Cauda Equina Syndrome and was talking to her about the Spinal cord injuries they support. On hearing they support TM she pointed him out to me and a week later he came and saw me and gave me some valuable information that is given out to SCI patients. I was referred to their Healthcare side who now provide all of my catheter care products that are delivered each month. 

Since leaving the ward I’ve not had any contact from any organisation and it’s because of this I feel so stranded. 

I don’t just want support for myself but for my family too. Paul will never admit he finds it all difficult. He is a typical stubborn male but I see it in his eyes. 

As a family we have always been strong, having Lewis has given us new strengths and abilities in dealing with all manner of things. I guess that’s how we’ve got as far as we have in this situation. 

Oh well onwards we go. We’ll fight on as that’s what we do. 

It’s been a while since I last posted on here. School holidays have been a tad hectic, keeping Adam occupied whilst grinning & bearing my symptoms.

I’ve had to make sure I am awake when  Adam is as it wouldn’t be fair on him if I slept day in , day out. 

We’ve managed 3 outings -Paultons Park thanks to The Rainbow Trust, Starlight Popham Escape at Popham Airfield and a morning at Southampton FC ground, St Marys for the Saints Disabled Supporters Association fun day where they had stalls of all different items that were of use to/support disabled fans and their famlies. 

I was able to pass out flyers (that I had designed) for Southampton Doing It For The Kids. 

I got to speak to Matt Le Tissier & Franny Benali and some of the old crew from the FA Cup winning team. I was able to pass on information about the charity and hopefully will turn in to something. 

All these day trips have lead to me being completely wiped out for days after. Burning arms, pins & needles, heavy arms and legs and more, it is just a nightmare. It really frustrates me to ask for help but on those days I end up nodding off anywhere and everywhere.

The worse thing that has happened this holidays is embarrassing not only for myself but for Paul as well. He hides his embarrassment well but I know him inside out!

One Saturday morning I was woken up by a very wet & cold elbow. Being half asleep I assumed I had it resting against my bed bar, that I use to sit up in bed. I was so so wrong. When I looked down I discovered that my night bag and leg bag had become separated from my catheter valve and had, over the course of the night, proceeded in allowing my catheter to free drain all over myself and the bed. 

I was absolutely soaked, the bedding was soaked. Thank goodness for my terry towelling mattress protector that the Spinal Injuries Association – Healthcare had given me when I first came home. It saved the mattress from being soaked and was a relief to realise that it wasn’t as bad as I thought, but it was still bad. One of the bags had emptied onto the carpet and was going to take some clearing up. All hail pet odour spray!!! It worked a treat. As for cleaning me up, it took me a good hour and half to get myself and the bed stripped and changed. The biggest hindrance was that I kept crying. I was mortified and embarrassed that my husband had to see me in that state. I always said I didn’t want him to be my carer but in that instance I needed him. Reality kicked in as he needed to get back downstairs as he was Lewis’ carer until 8pm (I should have been doing that not Paul) and I had to sort myself out. So tears or not I had to find the energy to get myself changed and sort the mess out. 

My arms neck and shoulders burned as I tried to get my top and trousers on. Sharp needles from my shoulder blades to my elbows. 

I managed to get dressed, much slower than normal and managed to get downstairs and into my chair. I felt like I had to hang my head in shame. I know I didn’t but that’s how I felt. Everyone was carrying normally, no looking,staring or comments. The washing machine was on doing its thing and all was normal. 

I know my embarrassment probably shouldn’t have been such a big thing but it was the first full flooding I’d had since coming home. I’ve had minor floods where my leg bag has separated from it valve when in chair and it’s run all through my trousers, over my chair and onto the floor. In fact one of these episodes happened at Lewis’ Birthday BBQ Bash. My poor sister in law had to rescue me and kindly wheeled me down to the disabled toilets. Instead of leaving me to it she helped me get out of my wet clothes and change into clean dry ones. She didn’t bat an eye at having to help, in fact she did it without a second thought. My embarrassment was almost unnecessary. 

Any way I’m learning slowly that I needn’t be embarrassed around my family. Their understanding, compassion & love for me means they’ll help me no matter what and for that alone I shouldn’t be embarrassed around them. Another step I need to take on this horrible roller coaster ride called #transversemyelitis