Did I say I was pregnant?! After what feels like years of research the last nine months have gone fast, pregnancy moves at a different rate to MS (and thankfully the NHS is forced to follow). Particularly this last trimester.
When I was originally looking up advice about MS and pregnancy, desperate to find information, all that was available was from the relatively undisabled. It felt like a wheelchair user with advanced MS was really getting pregnant into the unknown, and midwives, doctors, and social workers seemed equally stumped (was I the first person ever?!). Actually, compared to MS, it’s been okay – the fact that there is a finite time limit to any symptom is such a joy, imagine if you had that certainty with MS?!. My takeaway from it so far:
- It’s a very different perspective of the NHS. I can see why healthy people who just might have broken the odd bone and then have some babies think it’s fine. Appointments follow quickly, different professionals are joined up, and all within nine months. I see my neurologist every 14 months. I think it’s only because I’ve had MS so long he even knows who I am. The obstetrician consultant tried to refer me to a urologist (catheter problems) but we’ve heard nothing back… I imagine the child will be in school before that appointment arrives.
- I’m scheduled for a caesarean, the discussions around this were pretty brief. Leg spasticity, core weakness, and fatigue all made a natural labour seem too risky. I’m planned to have both spinal anaesthetic and epidural, which does carry risks with MS – where damaged nerves can be susceptible to more permanent damage. That’s the scary part, but as the anaesthetist said, you can’t just have a caesarean with paracetamol so we’ve got to choose something despite the risks.
- My suprapubic catheter has given me most problems during pregnancy. From around month five it was getting blocked every week, I tried changing pregnancy vitamins and filtering water but it didn’t seem to help, so I can only assume it was blocking with some pregnancy byproduct. My obstetrician was first to admit she didn’t know why, and referred me to a urologist… Still waiting for that appointment. So having gone from 12 weekly catheter changes I’m now lucky if I manage four weeks (and have also introduced saline flushes to try and unblock it weekly). In the past final month I started getting a lot of blood in my urine, running down the catheter so it looked like a transfusion bag. After calling midwives, district nurses and 111 I was sent to A&E where I waited for seven hours to be dismissed with antibiotics for a UTI, still without seeing a urologist (they’ve almost become mythical to me). The bleeding is still sporadic, and doesn’t look like bleeding from a UTI, so I’m guessing it’s as things are changing shape and baby is moving it is causing some kind of trauma along the bladder or scar tissue. Total self-diagnosis though. The area around my catheter has also been quite painful as I’ve grown, which we think is the scar tissue stretching. It comes in waves, but not something NCT will teach you about.
- I was conscious early on that my social care provision would need to change. Firstly to help me recover post caesarean and on maternity leave, and secondly to help me care for the baby – a very hands on job which I can’t do alone. I called them around month three to get the ball rolling and initially it was made impossible to even get through the referral point, I was told ‘We don’t do hypothetical assessments’ and to refer myself two weeks before birth. Anyone who’s ever dealt with social services knows how laughable that is, nothing is done within two weeks. I had to persevere and fight but eventually was in contact with a social worker who’s been very supportive and given me funding for three months with a nanny which was a massive relief and great result, Obviously social services take months to confirm this and then assume once they approve the payment the job is done… So the nanny recruitment has been somewhat rushed. But to me the most important thing is just that someone is here to physically help with the baby.
- I stopped taking my muscle relaxants (baclofen and tizanidine) when I found out I was pregnant. One week later and I was so much less drowsy with no noticeable change in my limbs – why have I been taking these for ten years!!? A month or so passed and my legs became very unwieldy, the spasms ever stronger. My right arm is now constantly cramped, and the leg cramps common in pregnancy anyway were amplified. Good to know the drugs helped after all.
- Daily blood thinning injections have been managing my risk of blood clots – higher anyway in pregnancy, but especially if you’re less mobile. It’s annoying sure, but compared to the old MS beta interferon injections, they’re tiny.
- My bowels have never been particularly regular, but pregnancy constipation is another level.
- The baby has been consistently small, but the recent growth scans show growth has slowed further still. Apparently it’s common for mothers with any chronic condition to carry smaller babies, be it asthma or diabetes. But despite my midwife’s reassurances I can’t help worrying that being in a wheelchair is somehow squashing the baby’s growth.
So overall pregnancy has been fine, with the worst parts those ultimately down to MS. It’s been decided that because of the slow growth I will be going in for a caesarean next week (week 37), with my next Tysabri infusion 20 days later… Wish us luck!!!
Source: thinkindecimals.wordpress.com